History

Sunday, June 7, 2009 8:06 PM CDT

This past week one of our main MLD Destroyers, Liz Caliendo passed away after a 12 year battle with melanoma. Liz was only 51, but she did more for people in need in her adult life than most of us do if we combined all our efforts. I first met Liz about 22 years ago when I and most of my close friends decided to put a softball team together shortly after college. Liz and her husband Sal wer in charge of the league. At that time,I remember Liz always doing charitable work for anyone in need. Besides being a key organizer in the Tomaino Children's Fundraiser, Liz also did charitable actions for St. Claire's hospital and many others. Whenever anyone needed help, Liz was there ready to help......Matthew asked me why she had to die. The only thing that I could think to say was that God had an opening in heaven for an Angel and Liz went to fill it. Rest in Peace Liz and thank you for all you did for our children. Please also pray for her husband Sal who is left to move on w/o his wife.

We just spend a beautiful day outdoors today. First,was the Point Pleasant street fair where Matt and Laura performed as a warm-up to their recital this coming weekend. We than went to Olivia's (Scott) birthday party. It is so nice and such a blessing from God that Matt and Laura are busy running around doing things that all children should have the chance to do.Both are anticipating the end of school and the summer break to begin. ....i jumped the gun on my last entry when I said Anthony was over the sinus problem. Guess again. It lasted about another month with Anthony (Mike and Michele)having many sleepness nights.He now (?) appears to be finally getting over it. Hopefully, he now can get back on track with his therapy.
Michele and I will be celebrating our 15th wedding anniversary on June 25th. Time has flied and we have weathered many a storm. We have a pretty similar marriage to others around us, but we definitely share a bond that many others cannot understand.

Well enough babble. Hopefully the next entry will be from Michele. You may want to encourage her abit. I don't think she believes many people check in enough anymore for it to be worth her while.

God Bless....and please pray for all the sick children in the world, especially a boy named Bill Sinclair who is currently having a transplant in Australia to stop his MLD.

Mike

Wednesday, May 6, 2009 12:00 AM CDT

**** CHECK OUT THE NEW PICTURES!!!! ****

WOW, has it been that long.I keep bugging Michele to update once and awhile for those of you who don't see us in your daily lives. May is finally here and the flowers are blooming............wait, I mean the clouds are here along with the rain. Yuck, the spring has been horrible so far...damp, cold or rainy.
Where to start. Let's go youngest to oldest. Laura is doing great. She goes to dance two nights a week and sometimes on Sunday to get ready for the June recital. She is getting really good. She also is playing softball in a recreation league. School is going well, although she is ready for summer just like her brother Matt.

Speaking of Matt......he is playing baseball again after not playing last year. Most things that Matt does don't come naturally easy to him, especially athletics, which was something he excelled at before transplant. He has improved alot in catching and hitting. Also his reading and overall core strength. The physical therapy he does once a week with Kelly (PT) has helped him tremendously. We are thankful that God gave Matt the gift of desire and perseverance. He works hard at everything.
Matt also is getting ready for his hip hop performance this year at the June performance.

Anthony.......he had an awesome winter healthwise until spring hit and the sinuses got backed up. He struggled with a sinus drip for about two weeks before we eventually put him on an antibiotic( he is fine now).During all this (April 21st) he became a TEENAGER!!! I can't believe we have one. It is not what I envisioned 5 years ago, but am thankful for the progression he has made to this point. I keep telling Anthony....... now that you are a teen, you are supposed to mouth off to your parents, get started!
Somone asked me this week how he was doing. I reflected, and then said," Anthony has made it through the mountains and deserts. He has weathered the storms. He now is at the bottom of the wall ready for his reward of healing, but he does not know how to begin to climb up or scale this wall. He tries abit and just waits for the help needed to begin his climb. All that we can do is continue the support and therapy, while we wait and trust in God's promise of healing. It can be a fustrating and angry wait at times, but our faith must remain strong.

Happy Mother's Day to All... you are deserving of it....I know my wife is the best mom I could ask for my children. I Love her dearly and would be lost without her.

God Bless,

Mike

Wednesday, February 25, 2009 1:18 PM CST

First, let me start by saying thank you to those who took the time for vote for Mike on the jerseyshore.momslikeme.com website for the "Hot Dad" contest. While he didn't even come close to winning (his 34 votes don't compare to several who have over one hundred...wow...that's a lot of friends!), we all know it won't take a prize to prove to Mike what we already know -- that he is a great dad, husband and friend. You can continue to vote until February 27th if you haven't had the chance yet (one vote per person). Thanks again! I can't wait to show Mike all your entries! He still doesn't know!

The last few weeks have been a little tough. We've had a bug in the house that we can't seem to get rid of. The good news is it seems to only like Mike and me! I've been out of commission since Monday with strep throat. This is the worst pain I've had since childbirth. Talking and swallowing are out of the question. I've been on Zithromax for 2 days so far and no relief yet. The doctor even gave me Vicodin with no relief. Mike has been great...taking care of 3 kids with very little help. That's no easy task with all the therapy and activities the kids have. To keep up with some of it, we had to sacrifice therapy for Anthony 2 days this week. Now you know it's serious when we cancel therapy! But, thanks to Lorrie and Mike's dad, Mike's been able to get the kids to most places. I feel terrible to put so much on Mike (homework is no easy task in 3rd grade!) but he's been great as usual. Although, he's jokingly trying to make me eat my words that men are babies when they are sick. All I can say to that is at least mine illness is real! Ha!ha!

So, I can't speak much on how the kids are because I am avoiding them at all costs. Matt and Laura have been great. Usually, they always want their mom, but I think the way I look scares them so they know I need my rest!

We have a few prayer requests...Jim Keigher's brother Mike, Carolyn Wyman, and Lucas Viscomi.

Talk to you soon!

Love
Michele

Monday, February 16, 2009 9:19 PM CST

Happy Birthday, Mike!

*JUST ONE VOTE PER PERSON! (poo!)
A local paper is having a "Hot Dad" photo contest and I've submitted Mike's picture. It's my chance to let Mike know how great of a dad he is. The last five years aren't exactly what Mike expected fatherhood to be like, and he has certainly exceeded the typical fatherly duties! I want Mike to see how great we all think he is and what a great job he is doing as a dad. He gets a vote whenever someone leaves a comment at his picture site.
The website is
www.jerseyshore.momslikeme.com
The picture posted is of Mike and Laura. The caption is "Daddy and his little girl". As of now, the picture is on page 1. Voting started Sunday, Feb. 15 and ends Feb. 27. Please take some time to let Mike know he's doing a great job. And please tell others to do the same. Mike deserves some recognition!

Happy Valentine's Day!

First, let me thank you for your prayers regarding insurance coverage for Anthony's formula. It has been approved for 6 more months. Phew! One less battle to fight. We've also gotten the go for more therapy hours so Anthony can continue at the pace he is at. Our case manager is a wonderful advocate for Anthony and we appreciate all her work!

Mike spoke too soon about Anthony's health. Although, it still isn't too bad. He caught my cold and has been battling a stuffy nose and cough for a week. It's slowing him down some in that he is pretty tired, but so was I and my cold lasted for a week, too. Matt caught something also. He had a low grade fever, stuffy nose and head and sore throat; he missed school 2 days this week. Laura is going strong. Her underactive thyroid is finally getting regulated. She has looked really good since we recently increased her dosage. She's not as tired as she had been.

Despite the cold, Anthony continues to eat well. I commented to Anthony's speech therapist recently how it was in March, 2006, when Anthony had his first taste of food after a year and a half of not eating. She was amazed. She said she wasn't aware it had been that long of a time that he didn't eat. She asked who's idea it was to start feeding therapy and I told her it was the occupational therapist. But she said, "No, I mean, what doctor recommended it?" I had to remind her that doctors wrote Anthony off a long time ago. He fit in their MLD box and that was it. It just goes to show you what prayer can do. It also goes to show how much more medical science needs to learn that they don't know everything! How we count our blessings every day for all the Lord has given us. It's easy to get discouraged when you don't see big improvements on a daily basis, but the small gains add up over time. It seems unreal that almost 3 years later, Anthony is now taking half of his daily calorie needs and counting! Keep those prayers coming. See...He listens and answers...in His time.

Love
Michele

Sunday, February 1, 2009 4:56 PM CST

Hi all,

Hoping winter continues to move quickly along. The Tomaino's have been a pretty healthy bunch....especially Anthony. He looks great and continues to have a sickless winter........although I know he is craving the warmth of the spring season. He continues feeding therapy three times a week and is eating about a third of what a child his age and size should be eating.Now that he is eating, the insurance company is trying to cut his formula.Our case manager basically said we would have a better shot of getting the formula approved if he was not eating at all. It is ironic, you push and work hard to achieve goals, and you feel like you are being punished. Hopefully, we can get them to approve it because the cost of formula is not something we want to take on with the current cost of basic living. Ellen, Anthony's PT, has been working on him standing leaning his arms on a square pad positioned a foot or so below his height. He has shown some improvement throgh his thoracic spine while doing this activity.I tell people when they ask me that Anthony has all these areas where he has made mild improvement, but does not know how to connect any of them together. He is not aware of himself in his own space.
Matt and Laura are well. Matt had a short bout with strep throat, which he gets every year, but handled it well and is better. Laura has been fine other than a stuffy nose on occassion.Matt has made significant improvement in PT over the last few months because of hardwork and a talented PT named Kelly Lynch. She has been like a personal trainer for him. I just wish he had her more than one day a week.
Michele and I definitely have the winter blues and we are looking for the day when the weather is mild enough to get Anthony out of the house.
Thank you for your continued prayers for Anthony. He still needs them to get to the next level.
Be in touch soon.

God Bless.

Mike

Monday, December 29, 2008 4:18 PM CST

Merry Christmas, everyone. Hoping you all had a blessed holiday.

Saying that has less meaning as the years pass. I hate to sound so somber, but that's what the holidays do. Five Christmases later and we're still awaiting our miracle. Without it, the holidays are difficult. People mean well when they ask how our Christmas was and we mean well by smiling and saying "great" but truth is they will never be the same. Our Christmas morning is not spent as a family. Matt and Laura wake up early and Anthony sleeps in (he needs it). As the day goes on, Anthony is either uncomfortable or overstimulated. He isn't himself. But he hasn't been lately. Each passing Christmas gets harder and harder. It has always been my favorite holiday, focusing on every detail, searching for the perfect gifts, decorating like crazy. But my enthusiasm has waned. Not all the decorations were put up, not quite sure what the perfect gifts were, not worrying about the details. What makes it harder is knowing it was Anthony's favorite, too. It's hard to find peace in the day when I can't see him enjoying it like he should. Believe it or not, over these past 4 and a half years, I haven't uttered the words "it's not fair" very often. But this Christmas I think I made up for lost time. It's been a tough week.

I'm going to stop there. I apologize for the depressing entry. I selfishly did it for me. I needed to put the words on screen. It's cathartic. It doesn't make it easier but it helps to air it out. I'm not sure what people think our life is like but it certainly isn't normal. We're home and we're together but it is still trying and difficult. And very emotional.

Enjoy the rest of your holidays and may you all have a happy and healthy new year.

Michele

Thursday, December 4, 2008 10:58 PM CST

Okay, I'm back. I can't say Mike wasn't far off base in his explanation of what has kept me away. But, faith never ceases even when disappointment sets in. Doors have always opened, just not in the order we planned. You think we would have gotten that by now! But, when Anthony's vocalizations didn't go the direction we anticipated, other plans were in store.

Mike mentioned that Anthony has been eating better and I was meeting with the nutritionist. Anthony is now eating over one third of his daily calorie requirements! I can't tell you how huge that is. Three years ago, Anthony was getting 5 cans of formula a day through his stomach tube. Today, he is down to two and a half cans. Anthony has been gradually increasing the amounts of food he eats. In September, his speech therapist thought Anthony would be a good candidate for Vital-Stim therapy, which uses small electrical current to stimulate muscles involved with chewing and swallowing. This meant changing speech therapists and increasing feeding therapy to 3 hours per week. The gains were almost immediate. Anthony was responding well to the Vital-Stim during his treatment sessions (increased muscle movement, better swallows, better handling of food) but more important was how he ate at home and school without the electrical stimulation. We used to struggle to get Anthony to eat an ounce of pureed foods. Now 2 - 2 1/2 ounce is his minimum. And you can pack a lot of calories into 2 ounces of pureed foods! For example, an uncrustable (Smuckers PB&J sandwiches) purees to 2 1/2 ounces and is almost equivalent in calories to a can of formula. And, Anthony being a huge PB&J fan, eats one every day! Lately on his list of favorites is the chocolate pudding cups (he eats the whole 3 1/2 ounces!) and crushed oreos with milk (easily takes 2 1/2 ounces which is at least 6 cookies!). So, we've just changed gears. I like to think that talking is on hold now because you've got to eat before you can talk. Isn't that the way it is with babies?

Feeding Anthony gives me great pleasure. It is instant feedback of his successes. How much he has overcome. To watch him open his mouth for the spoon, or pucker up when he doesn't want anymore is proof of God's handiwork. I give praise to Him everyday.

While it is helping a great deal, adding Vital-Stim is a big committment. Anthony used to have no therapy on Tuesdays, but now, he is at therapy everyday, going for a total of 8 hours a week between physical, occupational, and speech therapy. Add to that Matt going 1 hour a week (he was going twice a week but he is doing well, thank God) and our schedule has our heads spinning. Most days, Mike and I pass each other going in and out of the house because there is everyday stuff, too, like dance, scouts and school activities. Some days I feel overwhelmed and think we're all doing too much. Most days I don't feel like I'm doing enough. We enlisted that help of a tutor for Matt to work on his reading because we just couldn't cover it enough. And Laura is acting act for attention because we take for granted that she doesn't need us for too much. I guess you'd say our issues are similar to other families of 3 except with a little more baggage. Well, I'd say a lot more baggage!

It's always exciting to tell you our successes and gains. If I can validate your prayers, hopefully you'll send up more prayers! Plus, I promised God that I would give Him all the glory for the blessings He gives us. Please continue your prayers. Intensify them if you can. There is no doubt for me that Anthony has more wonders to come. He just needs some help getting there.

Love
Michele

Thursday, November 27, 2008 11:18 PM CST

Happy Thanksgiving to All.

From the Tomaino's

Mike, Michele, Anthony, Matthew, Laura Grace

Tuesday, November 18, 2008 7:12 PM CST

So sorry folks......Michele has been busy on all ends and has not had time to update.Sometimes I think she wants so much to tell you your prayers have been answered, that when it doesn't happen it unconsciously keeps her away from the site. In checking in myself, hard to believe it has been over a month.
Let me get right to Anthony. No, his flurry of trying to speak did not materialize into something big. Right after the last entry, he caught a cold and it took along time to get rid of it. Close to a month. This knocked him down for quite awhile. But as you all know, Anthony's determination and resilence usually win. Although he is not talking alot, he has begun to eat alot more. The electrical stim program he has been participating in has awakened alot of muscles in his throat area. Michele will be meeting with the nutritionalist at the rehab this week to discuss cutting back on his cans. Anthony continues to work hard in theray four days a week. Please send up a prayer for all his therapists for the knowledge and guidance needed to help Anthony.

Matt is also working extremely hard. He has been going for PT twice a week to try and strenghten his ankle and leg muscles.His therapist Kelly is another Godsend. She has worked very hard and is dedicated to Matt. He also has been goes for extra tutoring to help reinforce his skills in school.

Laura is doing great. Still trying to get her past the " world according to Laura phase". She is a sweetheart, but, well, I guess it is a girl thing.

Michele and I are grateful, but it still doesn't make things easier. Each and everyday is such a challenge for both of us to try and make sure we are getting the kids what they need. On the surface things are so much better, but the struggles and the aftermath of the transplants live with us each and everyday.

We are so thankful to God for each other and the children.

I will remind Michele to check in asap.

God bless,

Mike

Tuesday, September 23, 2008 8:05 PM CDT

Let's see how many of you are still out there waiting to storm heaven with my urgent prayer request. This is actually praise along with a GREAT prayer request. Anthony is making HUGE attempts to talk. Thanks be to God!! He IS awesome and we are proud to be witnesses to it. Anthony has been making more sounds lately but tonight has me over the moon and singing God's praises. His mouth is moving differently, his tongue is moving, his whole body is making an effort. PLEASE raise Anthony up in prayers for the return of his speech. If you could see how hard he is trying, you would be smiling along with me. But, just have the faith in what I tell you and know it will come.

PRAY, PRAY, PRAY!!!

Love
Michele

Sunday, September 7, 2008 9:00 PM CDT

Wow...am I ever behind! This entry is going to a doosie for me to write. Lots of time and lots to tell. No news is good news but doesn't mean we've been idle. So, here goes...

The summer seemed to go by fast but wasn't very fun-filled. Anthony had his usual 6 hours a week of therapy PLUS 10 hours of home bound school for extended school year. It was actually less than that because we "dismissed" the physical therapist they sent. He was so awful. But to counter that, Anthony had a GREAT school OT who worked beautifully with Anthony. She was so experienced and had a nice rapport with Anthony. Speech and the teacher are time fillers; although the teacher Anthony had did some creative things with him. But, it's a full week and family day trips were next to impossible. I think we went to the beach just twice this summer. Bummer! Especially since we live 5 minutes away!

Matthew started his PT tune up this summer. Matt's heel cords are tight and his stomachmuscles are weak. His therapist is Kelly and she's great. She loves Matt and appreciates his cute humor but works him hard in spite of it! She's getting nice results, too.

Laura went along for the ride this summer. We managed to squeeze in a day to the Cape May Zoo and Ocean City Boardwalk just before school started. That was a nice day.

Anthony's trip to Upledger began as a disappointment. Four hours delayed in the airport goint to West Palm Beach, got settled into the hotel at 2AM, and started the day of craniosacral in the midst of a tropical storm. I've been to Florida a lot and I never remember seeing rain fall so hard so quickly. In getting Anthony out of the van to the overhand, a mere five feet, we were soaked to the skin. Anthony had 2 sessions everyday, 2 hours in the morning and 2 hours in the afternoon. That Monday, we got soaked twice! Then Tuesday, like Mike told you, we were cancelled. So by Wednesday, I was feeling frustrated. It should have been his 3rd day and it felt like his first. After talking to the therapists of what I was feeling, they did some craniosacral on me, too! Of course I felt like I was taking time away form Anthony but it turned out to be quite revealing. While one therapist was working on me and the other on Anthony, they determined that our craniosacral rhythm was in sync. When his rhythm stopped, mine stopped and vice versa. I always knew I had a special connection with Anthony but never thought it was that tight! After that session, I felt better about his treatments and saw more amazing work over the next 3 days. Craniosacral therapy continues after the therapists are done. And the amount that Anthony had continues to process over the next few weeks. We have seen the most effects of it this past week. Anthony is so relaxed and moving his arms and head more. He was having lots of pain and tightness in his left shoulder and it has lessened so much. So, despite the storm, it was worth the trip.

Anthony got to work with a new physical therapist a couple times this summer. She was filling in for summer vacations and how blessed we were that she was. Like so many others, she felt a strong connection with Anthony. She asked if I would consider letting a friend of hers do a reiki session on Anthony. Being big fans of alternative health now, I said of course. Little did we know her friend was planning on doing it from her home when we didn't know (she is a master Reiki therapist and can do "absentee" sessions). What came from her session was more than I could have ever imagined. She gave me something I have been needing...an idea of what Anthony is thinking. His energy told her that his neck hurts from holding up his head (we've been pushing this a lot, too). He told her he doesn't was to disappoint anyone. And he said he wanted a better understanding of the treatment he had. And he wants to rollerblade and play video games! She picked up other things in her session, things she didn't and couldn't know (she picked up that his right foot points down and it does without his braces on; she picked up something about angels, something that I tell Anthony almost every night that not even Mike knew about). Anything we can do to help Anthony fight and win this battle we will do. We are just so blessed to have so many wonderful people sent to us to help us do just that.

Back to school last Thursday went smoothly for Matt and Laura but Anthony had a little glitch. He woke up with a fever on Wednesday. It was on and off for a day and a half so he missed the first 2 days. He recovered quickly. But I teased him that he planned it so he didn't go back to school! So tomorrow will be Anthony's official first day of school. Matt and Laura like their teachers and are doing okay with the early morning starts...so far!

Saturday, September 20 is the Walk for Wishes. We are all walking and hoping more join our team. You can check it out at www.wishnj.org and search for our team, "Anthony's MLD-stroyers" or search for our home page for walkers Mike & Michele Tomaino. It's local (in Manasquan), it's a great time of year and it supports a great organization that gives kids the chance to forget about being sick if only for one day.

PHEW!! That wasn't so bad. Now, just to get some new pictures posted! If all goes well, they will be there when you're done reading this!

Love
Michele

Thursday, August 21, 2008 11:34 AM CDT

Hi All,

Sorry for the lack of updates. Michele and Anthony are at Upledger institute this week in Fort L., Fla for cranial sacral therapy. They got there late this past Sunday night because their flight was delayed 5 hours due to storms in Florida. They also lost Tuesday because the institute had to close for the day due to the storm. Such as, the week has not gone as planned. The therapy proceesses over the week and culminates with most of the effectiveness at the end of the session. Hopefully missing Tuesday wouldn't hurt his progress. Michele will surely update upon her return about the trip.
Anthony definitely needed the break after a long summer of therapy. When most kids take it easy during the summer, Anthony is hard at work. We ask so much from him and he tries to do it all and please us. He is such a hardworker and a determined kid. On a positive note, Anthony is starting to eat very well. We are feeding him twice a day with the hope of getting rid of formula cans at night.

My brother Joe was married this past weekend. All the kids were in the wedding party. The flower girl( Laura) was beautiful. The ringbearer ( Matt) was the life of the party. He was very handsome. Anthony was a very happening handsome groomsman. We wish Joe and Kristina years of health and happiness.

When Michele gets back, I will have her update the trip and put on pictures of the kids in the wedding and a picture of Anthony standing in therapy.

Prayers are still needed.

God Bless.

Mike

Monday, July 21, 2008 10:04 PM CDT

I can't believe so much time has passed since the last entry. Before I get to the kids, I need to ask for some very special prayers for some very special people.

Our good friends, Mike and Sue, need prayers for Mike's dad. He will be having quadruple bypass surgery tomorrow morning. This totally came out of the blue but is obviously significant to address it immediately.

And, while you're praying for Mr. Dilloian, add lots for Ed Zacherowski. He will be donating his kidney tomorrow for his mom. Not a simple task but a very generous one!

We will be thinking of them both and their families throughout the day and days ahead.

The kids are doing great. The summer seems to be flying by. Laura is enjoying camp. Her favorite part is art. Matt could care less if he goes or stays home. Anthony continues to forge ahead in therapy. He has a new occupational therapist for the summer through the Point Pleasant school district, and she is a great addition to Anthony's team. She is very knowledgable and is noticing things that Anthony hasn't been doing. He is still eating well. Our goal is to reduce his formula amount by the end of summer. And, the standing continues to improve (sorry, no pictures yet).

Sorry for the quick entry. I don't have my thinking cap fully on tonight. I just really wanted to get on the prayer request for Mr. Dilloian and Ed. And while you're at it, it can't hurt to add a few more prayers for Anthony to start talking. I know, I'm greedy. But I figure, while you have his attention....

Love
Michele

Thursday, July 3, 2008

HAPPY 8TH BIRTHDAY, LAURA GRACE!!!!!

When did you get so big???

Check back for a new posting.

Love
Michele

Wednesday, June 25, 2008 10:56 PM CDT

I'm so mad because I just got done typing in a long entry and the computer froze. So, I'll try to remember the gist of it. By the way, it's not easy...the "y" pad popped off of my laptop a couple weeks ago. I never realized how often I need to press that letter!!

Thank you to those who took the time to sign the guestbook. It's good to know there are more than 3 people still reading! It's also reassuring that our pray requests are being known. Thanks. It really means so much to us.

We saw Dr. Versendaal yesterday. Since he has been treating Anthony, it was the first time he said Anthony's heart is "healthy." The work that Dr. V. does coincides with craniosacral therapy. They both deal with listening to the body through energy and rhythm. So when Dr. V. says Anthony's heart is tired and craniosacral therapists say there are restrictions around Anthony's heart, they are picking up on the physical and emotional state of the tissues and cells. Having had open heart surgery when he was 4, receiving mega doses of chemo and enduring significant physical changes, Anthony's heart has experienced great physical and emotional pain. I firmly believe the nutritional supplements that Dr. V. recommends and craniosacral therapy (both of these through the grace of God) have brought Anthony's heart to a "healthy" place.

Anthony's rash is, dare I say, looking a tiny bit better. It has spread so much that it's hard to tell if it's getting worse or better, but I can say today I see a difference. I have been praying on this rash a lot. I want his body to focus on bigger things so we need it to go away. Anthony has been making nice changes recently. His body needs to focus on this. Anthony is so close to the next level. I can see it in his eyes. There's a different expression, a different awareness there. God is at work. Stay tuned...major things are coming.

Today was our 14th wedding anniversary (thanks, Patty!). Hard to believe. I know I"m not an easy person. I'm stubborn, picky and expect too much. So, kudos to Mike for lasting this long! We got past the 7 year itch (twice!) and endured what no one should experience with one child, nevermind three. But I couldn't imagine doing it with anyone but Mike. Thanks, honey! I love you!

And, thank you, Lorrie, for offering to take the kids to the boardwalk so Mike and I could go out. Anthony wasn't having a great day today (I had to wake him up early and he was fighting Ellen in physical therapy, so he might have been a little sore). We didn't want him to be miserable so we didn't go out. Lorrie still took Matt and Laura. And we were able to let Anthony rest, stretch out, and then go in his stander. Lorrie is awesome with Anthony. I'm so grateful for that. We don't get out often, but when we do, Lorrie's the one we turn to because we can have peace of mind knowing he is in good hands.

I forgot to tell you that last weekend Lisa and I saw Bo Bice! I think he was good, but the instruments were so loud it was hard to tell. But, he looked great adn was a good entertainer. Despite not being able to hear for 36 hours, I thoroughly enjoyed him! Looks like I'm making it a habit to only see Idol finalists. First Clay, now Bo, and in August, Daughtry. But if David Cook comes around, I may need to break tradition!

I think I remembered most of what I had the first time. Keep the prayers focused on the rash and then we can move on to bigger things. They are coming. I have faith.

Love
Michele

Monday, June 23, 2008 9:42 PM CDT

I know I lurk around other people's caring brdige pages, but I so understand what it's like to not have anyone sign in and let us know you're still there. It's nice to know that. Yes, we're doing well but the road is still uphill and we need encouragement, some days more than others. So, please consider just saying "hi" in the guestbook so we know there are more than 5 people reading the entries!

We're seeing some nice things in Anthony since returning from Florida. Ellen, his PT, says he's different. She says Anthony is so much more aware of his body. He is controling more muscle groups and actively using them. While she had him standing in his long leg braces, his head fell back. Ellen encouraged Anthony to bring his head back down, and he did all on his own. This is new. For Trish, his other PT, Anthony took steps while in his long leg braces. She was impressed! For Gina, his occupational therapist, Anthony extended his right arm fully, something she had to help him with before going to Upledger. So, we're definitely seeing changes in muscle control and movement. And Anthony is eating better, too. The quality has improved as well as the quantity he takes. Anthony ate 1 ounce of Spaghettio's and over 1/2 ounce of a Boston cream donut (all pureed). He really enjoyed it, and seeing how much he ate and how quickly, it was really rewarding for me. So all this great stuff made our decision easy. I have already made arrangements to go back to Upledger Clinic in August and decided to stay with Laura and let her continue what great stuff she started. I'm really excited about that.

Anthony is still having an issue with this rash that he has on the right side of his belly. I don't know how he got it. He is on his second antibiotic and it hasn't really started to work yet. I took him back to the pediatrician today and she prescribed a cream to use in addition to the antibiotic. Anthony says it doesn't hurt or itch but it looks angry. Please pray that this clears SOON. I trust that He will hear us!

Matt and Laura are going to vacation bible camp at St. Peter's this week. They are happy to go and we are happy to send them!

Tomorrow (Tuesday), the kids will see Dr. Versendaal. He will be at our chiropractor's office. I always look forward to seeing him and hearing what he is picking up on the kids. His changes always complement what Anthony is working on and helps him get one step closer to recovery. For Matthew and Laura, his recommendations always make a positive impact on their health.

I haven't updating the pictures yet but I intend to.

Please let us know you're here!

Love
Michele

Sunday, June 15, 2008 9:25 PM CDT

Anthony and I returned late Thursday night after four days of great craniosacral work. Since our return, Anthony has been sooo sleeeepy which is typical following the amount of sessions he had. His body responded really well to all the sessions. He went right to work immediately at the start of the first session. I will try my best to describe to you his experience. It's hard to put it in spoken words nevermind written ones but I will do my best. Let me start by saying that I can tell you this works and the therapists at Upledger really know their stuff. I know this because I had a session while we were there so I could understand it better myself. So, let me tell you about my session first because I can explain it best. Laura is the therapist Anthony had the entire week (in addition to a couple others; Kate is another who worked with Anthony a lot) and she did my session. She started with a light laying of hands where she thought my body was calling her - my lower back. She asked if I had lower back pain and then asked if I ever injured my coccyx (tailbone). I laughed because I remember very clearly about 5 years ago standing on roller blades and my feet went right out from under me and I bounced off my coccyx! So, she worked on that for a while, increasing the pressure of her touch which was helping to re-adjust it. She then moved to my left upper chest. She said I was tight in the same area Anthony was (I'll get back to that part later). She told me to direct my energy there. She told me to think about my left lung, then think about the middle of it, then go to the pericardium (covering of the heart). I was visualizing it all and then she said "yea, right there." Then, my mind wandered and she said, "no, you lost it; go back." My eyes were closed the entire time so she couldn't have known about my distraction. So, I pictured it all again and she said, "yea, you're back." And then I wandered again, and she knew again. She then moved up to my head and was working on the back and I felt a lengthenign in my neck. After an hour we were through adn when I sat up, I was quite foggy. Not dizzy or light-headed but hazy, blurred. I had this session on Thursday. I saw the work Anthony was doing and receiving but I had a much clearer understanding of it all afterward. So, this is what happened for Anthony...

Anthony's understanding of what we ask of him was as present at Upledger as it is everyday for those of us who work with him. He couldn't have succeeded without the ability to listen and direct his body as the therapists asked him. It helps that the therapists are so skilled that they know when the body's energy is where they are asking it to go and (in my case) when it isn't there. On the first day, Laura was drawn to Anthony's heart. This was an issue last September and has been a focus of Dr. Versendaal's, too. The stress of open heart surgery stresses the tissues. It leaves memories of pain and emotion. Laura spent a lot of time releasing the restrictions that were there. During craniosacral, the body can experience an emotional response to the release, especially if there is an emotional memory involved. During the release in his heart area, Anthony cried (Anthony shows us pain and discomfort, but he hasn't cried since transplant). Also notable on the first day was Anthony's movements. Kate described his spine to be untwisting. As she was describing this, I watched Anthony wriggle on the table he was laying on. At the end of it, he had moved so that his body was diagonal on the table. On subsequent days, Anthony had more and more active movement as restrictions were released and Laura/Kate told him to feel how his body felt. Now, it's important you know that Anthony doesn't have contractures. He has no limitations in movement. While he moves his right arm in a flapping motion and moves his legs randomly, his active movement is limited. On Tuesday, Anthony stretched out his left arm (an arm he usually holds close to his body/chest), raised it over his head, touched his head, crossed it over his chest toward his right shoulder and rested it along side his right cheek. He then raised his left hip and rolled over onto his right side. He lay there in perfect alignment, head resting on his left hand, and fell asleep. Anthony continued these types of movements the rest of the week. His left arm rested comfortably at his waist. His hands were loose and open. He moved his arms and legs in a controlled, purposeful manner. He continues to have this softness to him. I can see him thinking about his movements. I can see him thinking about how to keep his body loose when I tell him we're going to move or change positions. Laura said Anthony was at the peak of releases. Usually, they say to come back in 6 months. Laura said, because Anthony responded so well and participated so well, she would love to see him continue the progress he's making. She recommended we return in 4 weeks and participate in the intensive program. That is a 5 day program from 10-5 Monday through Friday. Anthony would have a different team of therapists, though. That's a big commitment and expense (this isn't covered by insurance) but we will always do anything for Anthony. I'm going to look into going back in August. But I'm not sure I want to change from Laura and Kate. Anthony had a nice connection with them from the get go. We can do the intensive program or do 5 days with Laura and Kate like we did last week. Please pray with us that we make the right decisions.

All three kids are done with school on Tuesday. I promised Anthony's school that he would be back for the last 2 days but he's still so tired and also has a rash on his abdomen that we can't get rid of no matter what we try. It's time we get it checked out so they will have to settle seeing him just Tuesday.

Thanks for checking in. Feel free to ask any questions about our trip to Upledger. I'm sure there's more to say that I'm not remembering. Thanks for your thoughts and prayers (especially this past Friday; it was St. Anthony's feast day). Please continue the prayers for guidance and an answer to the rash!

Love
Michele

Saturday, June 7, 2008 10:48 PM CDT

It's been a VERY hectic week. Matthew and Laura had field day and a play. Anthony had 2 class trips. And, this weekend was recital time for Matthew and Laura. Matthew did amazing with his hip-hop, and Laura was graceful and beautiful in ballet, tap and jazz. Pictures to come soon!

Anthony has been looking really great these past few weeks. Even his school sees a change. His occupational therapist at school told Anthony's aide that Anthony has turned a corner. Mike and I can't put our finger on it, and I don't know what's changing exactly, but I'm sure the Lord is at work doing something. And who am I to question that?

And maybe it's good timing for His work, because tomorrow I am taking Anthony back to Upledger Institute in Florida. This is where Anthony has intensive craniosacral therapy. Anthony had nice results when we went back in September and I am prayerful that more will come this time. I know God has a plan and I really feel this trip is a part of it. Please raise Anthony up in your prayers, especially this week. We will be back Thursday night.

Matthew and Laura have just 7 days left of school. Anthony gets to miss this week but will go back for his last 2 days. The three of them all end on the 17th. It can't come soon enough!

We are in the process of closing off the garage. And it's a good thing because we had water again! Fortunately, it wasn't bad this time. Just a skim of water across the basement and garage. The biggest loss was the carpeting in an area we made for the kids' playroom.

I haven't talked about my dad in a while. I've often talked how my dad is a shell of the man he was since my mom died. He has changed so much. He's slow on his feet, unmotivated and forgetful. He was recently labeled with Alzheimers. I say it like that because it's not something I want to confront right now. I will just say I am grateful that when I am with my dad, I can enjoy him for him. His forgetfulness of things doesn't affect my level of respect for him. He is forgetting recent events but often surprises me of things I thought he wouldn't remember. For me, dad is dad. When I see him, he's on the ball. He might ask the same question over and over but I enjoy conversations with him. Just last weekend, he moved into an assisted living place. Our hope is that a more social environment will be helpful and healthy for dad, stimulate him mentally and physically. He likes the place. It's small, cozy and comfortable. He's back to living on his own with help when needed. I'm glad for that and pray everyday that this helps him recover A LITTLE from the loss of mom.

Give a shout out to Mike this week if you have a chance! He seems to have the week all planned but I'm sure an extra set of hands wouldn't hurt!

Thanks for your prayers, especially this week!

Love
Michele

Wednesday, May 21, 2008 7:38 PM CDT

More communion pictures!! This time, it's all about the girl!

We had a BEAUTIFUL day for the walk! The sun, the breeze, the temperature. All good. But the company was even better! I have to give a shout out to those of you who came out to support us:
Dad Tomaino, Dad Mauro, Lorrie, Janice, Scott Maguire, The Hagan family (4), The Neville family (4), Mr. & Mrs. Williams, Eddie Kaminsky, Jackie Small and last but not least (better late than never, too!) the Oppegard family (4).
And thanks to those of you who couldn't walk but made donations. The walk raised over $5,000. Not a bad day. But, we'll do better next time!

Now, for Anthony, the beautiful day fooled his mom. The poor child had blistering burns on his face the next day. And he had sunscreen on! I felt terrible (still do!). He was in obvious pain Sunday and quite uncomfortable most of the week. But it is finally looking better. The blisters are open, the burn areas are peeling. We're lathering him up to keep it all soft. And, keeping him out of the sun, of course!

Friday night before the walk, a bunch of us were able to go out with Trish and her friend Carol. It's always great to see her. We had lots of laughs as usual. I could have stayed out all night.

Thanks for checking in. It still means the world to us!

Love
Michele

Thursday, May 15, 2008 8:01 AM CDT

More Communion pictures!!!

Tuesday's clinic went just fine. Just the routine physical and blood work. We got tied up waiting for the blood work to be drawn so the day was longer than we hoped. Poor Anthony was stuck 4 times and still didn't give enough blood. Anyway, their bone marrow has recovered really well. Their blood cell counts are all normal(always were). Sometimes, the conditioning with chemo and transplant can weaken the marrow resulting in it not producing normal levels of white and red blood cells. But Anthony, Matt and Laura's are good. Matt and Laura were excited to see Ginny (nurse practitioner) and Carrie (one of the clinic nurses). Matt was over the moon to see his girlfriend, I mean fiance, Kim. They like seeing all the familiar faces, even the doctors! Unlike Anthony, who tensed up the moment we got on the clinic floor. He had a look of concern on his face. Can't blame him! Matt or Laura asked Ginny why they have to come back every 6 months and she said, "because I like to see you." It's comfortable going there knowing we're not staying!

We finally know someone else who has a dog like our Ruby...Ginny!! She also has a Cavachon - a bischon, cavalier spaniel mix. We saw a picture of her dog and he looks just like Ruby, just a little bigger.

We are looking forward to the walk on Saturday. A HUGE thank you to those of you coming out to show your support. Four miles is a long walk but nobody says you have to walk the whole thing! Well, that's what I've been telling myself!!

On a silly note, how awesome is the American Idol finale??!! This will be the first year where my favorite person wins!! That's because they are both my favorite!

Okay, I digress! Keep checking back for more communion picutres. See you at the walk!!

Love
Michele

Monday, May 12, 2008 8:41 PM CDT

Well, Communion pictures are here! There are quite a few to choose from, so I will change them often. The ceremony was beautiful. We had an outdoor party planned but the weather didn't cooperate. It was cold and misty. We had some brave souls who withstood the cold. The kids always manage to have a great time. The entire day was a blur for me. I feel like I didn't get to talk to anyone. The best part of the weekend for me was Laura coming into my room Sunday morning asking, "Can we go to church so I can get one of those thingies?" After we made the deal that she would call it "the Body of Christ" or "the Eucharist", we managed to get to mass. My proudest moment was receiving communion with her. Laura is so little, the priest was ready to just give her a blessing, but when he saw her raise his hands, he said "Oh, she can receive." I told him "just since yesterday" to which he replied, "Oh, how nice!" That was my best day in a while!

By the way, a belated Happy Mother's Day! The kids take the day pretty seriously (at least until 10 o'clock). We had a low keyed day. We took my dad with us to the cemetary and then out to dinner. I asked Mike if he thought badly of me that I hate Mother's Day, but I know he understands. Not just because of my mom but for some reason, not having Anthony the way he was and should be hits me hardest this day. It's hard to explain.

Speaking of Anthony, he is 100% better. He is just trying to regain his endurance since the flu knocked him off his feet for 3 weeks. He continues to work hard. He has new leg braces that he can stand in with some upper body support. I'll have to get a picture of him in them. YOu can see how strong he has gotten as well as how tall he has grown!

Matt and Laura are counting down the days until summer vacation (25 by the way). They are quite busy these days. The recital is coming up in a few weeks. But before that is a street festival here in Point Pleasant. Matthew's class is doing their hip-hop number. He's really excited about that. It seemed like Matthew had rhythm until I saw him start this hip-hop class. His rhythm doesn't carry over too good in an organized routine but he's gotten much better since the beginning of the year. He's having a great time doing it. Laura has started softball again. It's overlapped with Communion and dance, but we're managing to fit it in.

We are going to Philly tomorrow for our yearly check-up. Actually, we're supposed to go twice a year. We were due to go in February but got backed-up with colds. Better late than never! The kids are excited to see everyone.

I'm going to be a pest yet again and remind you about the walk on Saturday, May 17 at Old Bridge High School. If you haven't already registered, you can do so at www.stennisfoundaiton.org or register at the walk at 12 P.M. If you can't make the walk, register anyway or sponsor someone who is walking. Every little bit helps.

Please say some extra prayers for some loved ones if you will...
Mike's cousin, Frankie Callano, passed away Friday. He leaves behind a daughter, Julie, who was devoted to him throughout his battle with liver cancer.
Liz Calliendo, a strong supporter of our kids, had surgery this past weekend
My friend, Kathy, is also recovering from surgery
And Kathy's father-in-law is having kidney trouble

Thanks for your love and support for our kids!

Love
Michele

Sunday, April 27, 2008 8:35 PM CDT

Anthony started turning a corner with this virus he's had last Saturday. He wasn't a hundred percent but better than he had been. So we were able to get away for a couple days. Last week was spring break for Mike, Matt and Laura. We went out to Lancaster Sunday through Tuesday. Lorrie joined us. Unfortunately, Anthony was up the entire first night with nose and chest congestion. What made it worse was the next next was his birthday. On Monday, April 21, Anthony turned 12 years old. I can hardly believe it. We made the best of the time away. Matt and Laura enjoyed the hotel's indoor pools and water slide. Lorrie and I enjoyed the shopping. Mike took Matt and Laura to the caverns one day. Overall, it was a nice break.

Anthony finally returned to school on Thursday after missing almost 3 weeks. Everyone there was glad to have him back and I was glad to send him. Not to get him out of the house but for him to have other faces to look at and more things to do.

We officially celebrated Anthony's birthday today at our house. He requested ice cream cake and ate a good portion! Even got a little brain freeze!

This Saturday, Matthew and Laura will celebrate their First Holy Communion. They are extremely excited! We still have more preparation to do. We need to make banners for their pews. I still have to get Laura's veil (talk about last minute, but with Anthony being sick, not much got accomplished!). Matthew will be wearing the suit Anthony wore when he made his communion. That is special for me.

The numbers are inching up for the MLD walk in Old Bridge on May 17. If you can't attend, please consider sponsoring a walker. MLD research isn't funded federally. It's up to us to raise money for a cure and treatment.
NUMBER ATTENDING = 16 and counting??!!

Love
Michele

Sunday, April 13, 2008 11:23 AM CDT

Well, the flu bug has officially visited our house. I got it last Saturday night and was bed bound for 2 days. I definitely could have stayed in for a third but Anthony got it as well. Anthony has had it the worst. He has needed oxygen for the past week and is really wiped out from it. It�s understandable. Matt was out of school for a week. I finally started feeling better after 5 days. And then Laura got it this past Thursday. Mike hasn�t gotten it yet but it�s inevitable. He stayed home to help with Anthony. This was the sickest we all have been in a very long time.

I want to pass information about the MLD walk in May at Old Bridge. I�m hoping we can have a nice turnout of MLD-stroyers. The walk is being organized by a woman named Susannah Rutan. She is a nanny for a boy named Eric who has an unnamed leukodystrophy. The walk is on Saturday, May 17 at Lombardi Field at the high school in Old Bridge. Check in begins at 12:00 and the walk begins and 1:00. Registration fee is $10 which includes a t-shirt. You can register online at www.stennisfoundation.org.

I�m hoping a lot of you can join us. We need to raise money for MLD and push for a cure. Trish will be coming out to run the walk. And it�s always great fun to see her!

Short and sweet today. Gotta get back to de-bugging the house!

Love
Michele

PLEASE TRY TO COME OUT FOR THE WALK!!!
Let us know if you�re planning on attending so we can post numbers on the site.
So far, number attending the walk = 5 (that would be us!!)

Wednesday, April 2, 2008 11:47 PM CDT

So, Matt's still home sick and I have somehow managed to stay off the roof. I'm pretty sure he's turning a corner but his energy level isn't ready to rebound yet. When you have a kid like Matt who is always on the go, a few days of him laying on the couch is a God-send. Three days of it though, is disturbing! It makes you miss his smiling energetic self. Remind me of this when he's better!

Anthony still has a cold but he is going to school. I haven't figured out if it is allergy related or a true cold. Either way, he's not happy. He's been a bit grumpy all week. But, I don't blame him. I'd rather stay home in bed all day myself. I'm sure he's cursing me in his mind every morning this week! Carolyn, I love what you said that if Anthony speaks only when he is distressed, we can�t complain when he doesn�t talk. Except that I do because hearing his voice makes me miss him more and makes me want to hear more.

So far, Laura has been spared. But with Anthony and Matt getting some extra attention, the queen is not happy. You have to understand that Laura keeps track in her head of each moment that is dedicated to someone other than her. Last week, I received a 10 minute lecture regarding Matthew sleeping in my room �like 10 times in a row.� After all, it�s not fair that �he wakes up in the middle of the night like 10 times in a row and gets to sleep with you and I don�t.� And that the next time he wakes up he needs to be told he�s done it �like 10 times in a row and he can�t do that anymore.� Did I mention this lecture occurred at 2AM? The queen is demanding.

I got a call the other day from the neurologist who diagnosed the kids. He called to tell me that he will be submitting an article for publication about cord blood transplant for MLD. There isn�t any research regarding the use of cord blood nor is there anything regarding improved MRI�s after transplant. Hopefully, it will be published and can benefit others. As of now, if I understand it correctly, MRI changes would exclude a child from qualifying for a transplant. That would mean that if Matthew was diagnosed today, they wouldn�t transplant him. Science wants everything to be black and white. But it�s not that simple.

Mike and I talked about that recently. No one in science would allow themselves to believe that Anthony will get better. It doesn�t match the textbook. We can�t convince them of it. We can only hope that Anthony teaches them. We can only hope that our testament of faith reveals what science can�t yet grasp. That the impossible is possible. Not necessarily because the body heals itself but because God fixes it. Or the body fixes itself because God willed it. Because He willed it in accordance with our prayers. I know we can struggle with that at times. If someone isn�t made well, is it because they didn�t ask enough? Didn�t ask the right way? I can�t begin to understand that component. All I can do is be devout in my faith, be assertive in my requests and be trusting in my God. Sometimes my trust is mistaken for lack of concern or focus. I don�t always need to know WHY something is happening. I think it�s quite interesting how I have evolved to this. After all, I am medically trained through the same textbooks that dismiss the impossible. I value them now as much as I did then but I have learned how to use their knowledge. I have learned not to dismiss things but to include thoughts that aren�t typical. And through faith, I have learned to decide when I need the reasons and when I can just let go. It�s made for a good marriage for me. This critical, medical thinker has embraced holistic care and alternative treatments. And this Catholic girl who for too long has only known how to fear God has surrendered her children to His care. And I feel good about all of it! Like I said before, Anthony�s role right now is to teach. It is through Anthony that God�s glory and power is revealed. He is my teacher. And I�m learning a lot! It�s hard to be patient but I am so proud to be a witness.

On a lighter note, a MUCH lighter note, I am prepared to address the American Idol issue. Now, Patty, while I agree in the great potential of David Cook, I feel like I would be betraying my love of Chris Daughtry to be a complete fan. (This is the part where Mike will be rolling his eyes when he reads this; but come on! After all that heavy thought I just laid out in the last paragraph, my mind needs to be silly once in a while!)
I am intrigued by Michael Johns. One because of his raspy voice and two, because I went to grammar school with a guy named Michael Johns and it�s weird to hear his name on TV. I�m captured by David Archeletta�s voice. I wasn�t feeling well last week and fell asleep while watching American Idol. I aroused to a beautiful, angelic voice and then realized it was David! I can�t get past Jason�s hair to be a fan. And speaking of hair, I agree with Duffy about Cook�s hair�too �Hollywood meets Flock of Seagulls.� (are you laughing yet, Patty?) The Irish girl is good, too, but I�m pretty partial to the boys. I need to be WOWed in the next few weeks to pick my winner. Right now, those boys are my top 3. I also need a better theme week. How do you go from the Beatles to Dolly Parton???

Love
Michele

Sunday, March 30, 2008 8:55 PM CDT

Happy belated Easter! It was a nice day for us. Anthony slept in which left Matt and Laura to complete the Easter�s Bunny�s scavenger hunt without him. That bothered me that he wasn�t a part of it. But, like every holiday, we were pressed for time to get to the places we needed to be. And Matt and Laura don�t understand the concept of waiting. So I dealt. The time change, the early Easter and this relentless cold weather is not getting me in the mood for spring like it should. It�s probably making me a bit grumpy, too!

Anthony had his break this past week. Mike, Matt and Laura are off in April. But Matt had a mini vacation last week as he has had a fever since Wednesday. Not much other symptoms until he broke out with cold sores on Saturday. But, the fever is still there. Anthony started with a cold on Thursday. When he gets a cold, I like to be aggressive in treatment so we use the nebulizer and Vest a lot to keep the congestion out of his lungs. I�ll keep him home tomorrow to get in one more full day of treatments and prayerfully, he�ll be ready to go back on Tuesday. Just like him to get sick at the END of his break to stay our of school! I�ll keep Matt home tomorrow too until he is fever free for 24 hours. Matt�s the kind of kid that can drive you crazy when�s he�s sick. He�s either so miserable it makes you miserable or he�s bouncing off the walls with way more energy than you can imagine. My sanity will definitely break if he�s still home on Tuesday.

Anthony is still making sounds but not as frequent as he had been. Pain or frustration brings about more vocalization. Saturday we put on his hand splints and Anthony was visibly pissed off. I asked him if he wanted me to take them off and without hesitation he said a clear �yes.� He continues to go for craniosacral therapy weekly. One of the physical therapists (Guida) from the hospital has been coming and working on Anthony with Nejie. Guida comes to develop her skill but Anthony benefits form having 2 sets of hands on him. Last week he had a great session. Anthony had been having lots of facial twitches but he hasn�t had them since last week. Craniosacral releases restrictions that can cause various symptoms. Whatever they released relieved the twitches. I can�t really explain what I mean by a great session. But we can tell Anthony is more relaxed. Also, helping the craniosacral rhythm can exhaust the body. So Anthony was exhausted the entire weekend. Which pretty much explains him missing the Easter scavenger hunt. Which is why I dealt with it.

Anthony has been giving off some attitude at school. But they like seeing him like that and I can understand why. He has had some days where he refused to participate in therapy and intentionally turned away from the person working with him. It shows spunk! Not Anthony�s typical personality but it shows us he�s got fight in him. Physical therapy at the hospital has been focused on increasing upper body strength especially through his arms and chest. He has electrical stimulation to his arms and shoulders 3 times a week. Focusing on that is paying off but it leaves us to pick up on working on standing at home. We haven�t been good with that, though. You know how much there is to do in a regular day but add in the extra things that Anthony needs and it gets a bit overwhelming. Don�t get me wrong, I will do anything he needs but we are getting to a max of what we can actually accomplish in a day. One thing we�ve been more aggressive with that I really enjoy is feeding Anthony more. We�re trying to increase his calorie intake so we can reduce how much he gets through his stomach tube. I get such pleasure from feeding Anthony when I know he is enjoying it and when I know he�s doing such a great job. It�s rewarding.

A few weeks ago, we saw Beauty and the Beast at Jackson High School and got to meet Joyce (from the guest book). She said she recognized the kids from their pictures on this site! It was a pleasure to meet you and I�m so glad you came up to us!

It�s been so long since the last entry that I can�t think of all the things I should be telling you. But this is what�s happening now. Remember, Matt has been home since Wednesday, so I�m not operating with a full deck. I love that kid but, man, is he draining! I will do my best to update more frequently.

Love
Michele

P.S. Patty, I haven�t ignored your American Idol question. Of course I�m all over it! Give me one more week to remember everyone�s name and I�ll give you my predictions. But it�s really good this year, isn�t it?!

Saturday, February 23, 2008 9:40 PM CST

Our close friend, Steve Neues, passed away 3 weeks ago. Steve was a big part of our life in many ways. You may remember him as Mike�s friend who used to drive us to Philadelphia on our many trips back and forth during transplant. One time when Anthony had a fever, Steve picked up Mike and Anthony and drove to Philly during a snowstorm. It took them 4 � hours to get there. Another time when Anthony was in Brick Hospital (during another snow storm), he needed to be transferred to CHOP. Mike couldn�t travel in the ambulance with Anthony, and, yet again, Steve was there to drive Mike behind the ambulance. The kids always looked forward to his visits. They enjoyed going to �his beach� where he was a lifeguard. They knew he would spend a lot of time with them and take them for rides on the beach quad. When we decided to move to Point Pleasant, where Steve resided for the last 10 years, he was out every day looking at houses that were for sale that would suit our family. From the day we moved in, he was here often. Sometimes he came just for a visit, always with coffee or hot chocolate in tow; sometimes he came to help move things; sometimes he just stopped by to see if we needed anything. The best part was he never needed a reason to stop. But he did so often and we loved it. Mike�s most heartfelt memory of Steve goes back to Anthony�s stay in CHOP when he was at his sickest. Steve asked what he could do for Mike. Mike told him to go home, go to church and get on his knees to pray for Anthony (Steve wasn�t much of a church-goer). Steve did that and continued to attend mass every week until his passing. In fact, he was helping Michele to get back in a routine of attending mass. He would call every Sunday morning since we moved here to ask if she wanted to go to mass. Steve was a crusader for our children and more than just a friend to the both of us. His love for the children and us was a blessing from God yet our hearts are empty without him. We haven�t told the kids and don�t plan to for a long time. They have lost too much in the past few years and this would be as hard on them as it has been on us. Our time with him was too short. Not a day goes by without a thought of him or the hope that he will knock on the door or call on the phone. It�s been a devastating loss. Steve, our hope is that you know how much you mean to us. You were our friend, our brother. We are lonely without you.

This is our tribute to Steve. We will leave it posted here for a while until we�re ready to take it down.

Steve passed away 2 days before Mom�s 1-year anniversary. To say the least, it was a crappy weekend.

The cold bug has hit our house and is lingering. Matt and Laura started with it and Anthony still has it.

Anthony has been very vocal on and off. He was more consistent right before he got sick. He has been making different sounds than usual and making more sounds in a breath. It almost seemed like he was trying to get out a sentence. Sometimes we can figure our words, like �mom� or �dad� or �yes�. He seemed to say �Laura� last night. Also last night, something was clearly bothering him by his facial expressions. We were able to figure out, with Anthony saying yes or shaking his head no, that his neck was bothering him. When we told him we would give him Motrin, he settled down and was content. Please keep vigilant prayers for his speech to return.

The kids enjoyed the snow day on Friday, even though the snow didn�t amount to much after the rain came. But, the day off was a welcomed one.

Love
Mike and Michele

Sunday, January 27, 2008 8:24 AM CST

Just a quick hello. Nothing new to update. Everyone is healthy as we pass the half way mark of winter in N.J. Celebrated Pop Mauro's 82nd birthday last night with the whole Mauro clan.
Hopefully something exciting to update soon.
Prayers for Mike's cousin Frankie who is in the hospital figthing problems with his liver. Also prayers to all in need.
God Bless.

Wednesday, January 16, 2008 8:24 PM CST

Anthony had his botox injections yesterday. He was stuck in three different spots of his lest arm. He did well. Now it's just waiting for it to start working and releasing the tightness in his arm. I'm not sure why but he was REALLY tired today. He had one of those I-just-want-to-go-back-to-bed days. After school and therapy, we put him in his bed and he just crashed! We don't think he had a great night sleep last night. Or, as I like to think, his ody is resting up for the next breakthrough. God willing!

Laura came home from school today with an earache and low grade fever. She was bouncing off the walls so I'd say she wasn't too bad! My friend Michelle turned me on to garlic oil drops for ear infections so that's what we used today. Matt and Laura started swimming lessons a couple weeks ago so we're wondering if the earache could be from that. Laura still has one ear tube in but not in the one she complained about today. They both wear ear plugs in the pool. I guess we'll have to keep an eye on it for now.

It's a three day weekend coming up. Even though they were just off for Christmas break, they can use the extra day. We all can, actually! Mornings are crazy so I always look forward to an easy morning.

I forgot to mention something earlier when I started with Anthony. But maybe it's appropriate that I saved it for last. Friday night Anthony said "mom" at least three times and I finally heard it! He and I were the only ones home. Anthony was in his stander and I was sitting behind him, out of his sight. I think he was looking for me when he said "mom". I told him to call me if he needed something and he did 2 more times. He may have said it more but I don't think I realized what he was saying the first couple times. It's wonderful what you get when you least expect it. Thank you for praying for Anthony's speech. Please keep it coming.

Love
Michele

Friday, January 11, 2008 10:25 PM CST

So, I think we're all getting back into our usual routine finally. Anthony took longer than the rest of us. He had been sleeping in until 10AM during the break. But today was the first day he didn't groan at me for waking him at 7!
He had a good therapy session today, too. He was back on the lite gait (which is the suspended system over the treadmill) and was taking active steps. He hasn't been on that in months so Trish was pleasantly surprised at how well he did. He also met with Gina, his OT and her supervisor (Donna) who has a lot of technology experience. She brought a computer program that Anthony can activate with a switch. Anthony did great with it and hit the switch consistently. He also like the program, which is a bonus. This program would start with a picture and when Anthony hit a switch (which is like hitting the mouse) the picture morphed into several other pictures. This is the first program we've found that kept Anthony's interest. Donna hasn't seen Anthony since August and she was impresed with how well he's doing and how much stronger he is. On Tuesday, Anthony will get a botox injection into his left bicep. He uses this arm very little and it is getting tight. His shoulder is subluxed, too, from lack of use (this means the tendons holding the arm bone into the shoulder are loose), so Anthony tightens the arm to protect his shoulder. Anthony has active movement in that arm but not as much as his right. The botox should help us improve that.

Mike mentioned Matt's birthday. He is definitely a proud 9 year old! Laura didn't appreciate all the boys at the bowling party. My friend said Laura cracked her up when she said to her girl cousins, "Let's ignore them; they're just weird." Mat's birthday is typically hard because it's so close to Christmas and no matter how much I think I am prepared, I'm not. It always seems to sneak up on me. This year it was a little harder because his birthday is the day after my mother's. Mom's birthday was that last of the "firsts". February 3rd will be one year. It seems like a lifetime since I last saw her but it also seems like yesterday. It's hard to explain.

We're going to be looking into a new van soon. It's just not fair to Anthony to lift him in and out of the van and his chair, especially now in the winter with a bulky coat on. A family at therapy has a rear entry van. The hatch opens and you push the chair right between the 2 captain seats in the second row where it locks into place. One day during a hard downpour, the mom opened the hatch, loaded her son and was in her seat before I even pushed Anthony to our van. The one thing I like most about this is you don't have to be in a handicapped space. Handicapped spaces are more limited than you would think and forget needing a van accessible one. But don't get me started about that.

We're finished with the flood stuff and are now needing to replace our furnace and hot water heater. They are not working efficiently since the flood. I didn't realize how hard it is to get a plumber to actually call you back! We're looking for one if any of you have one to refer. Preferrably one who wants the job! And is reasonable!

Matthew and Laura make their Penance tomorrow. Surprisingly, they are looking forward to speaking to the priest. That guy's in for an earful!

Have a great weekend!

Love
Michele

Tuesday, January 8, 2008 12:22 AM CST

Hi ALL

Happy 2008. Hoping all of you have a safe and healthy new year. All are healthy as we begin to journey into the heart of the winter season. Although what a beatiful day we have today to remind us of what lies ahead this spring.
Not much to update. Matthew had a nice day this past Saturday on his 9th birthday party. He had a bowling party in the afternoon and family and friends over that evening. Laura and Anthony are well. Anthony can now get back into his daily re-hab routine.

Please say prayers for the Scott family. Brian's mom had a fall and needed surgery on her leg and it is very important the rehab team can get her back on her feet for the safety of her fragile health.

Best to all and God Bless

TUESDAY,JANUARY 8TH,2008

A belated but very merry and blessed Christmas!

Despite a mild bout of pneumonia that started last Friday, Anthony improved rather quickly. This was his first cold of the season, which in itself is a massive blessing. How strong he is getting! Each Christmas since 2004 seems to be better but never as whole as we wish. Christmas for us has always been a whirl of excitement�or should I say blur! It goes by so fast yet all that has changed for our family lingers throughout the day. We still long for Anthony to be his crazy self, tearing through present after present, looking for more when it�s all gone. And, then upon realizing there are no more to open, asking when we are going to see family to get more. I miss his voice, his smile, his laughter. I miss him showing me every single gift he opened as if I never saw it before. I know how blessed we are with all that we have been through. When I think back on all Anthony, Matthew and Laura endured, especially Anthony, I thank God every minute. I realize how many times things could have been much worse. I realize how many times God has worked miracles. It is days of celebrations that shadow that gratitude, though. It�s hard to rejoice when your child can�t. It�s hard to enjoy every moment when one of your children isn�t whole. Unfortunately, it takes the steam out of it. I don�t think anyone knows that or sees it as I try to hide it. I think I do a good job of that, especially for Matt and Laura, and Mike, too. But the pain and loss is ever-present. But the anticipation of more miracles eventually overcomes the pain�or at least numbs it. For everyday I see more of Anthony. And it is that glimmer of his presence that I celebrate. It is my reminder of more things to come.

While Anthony hasn�t said any more sentences, he is definitely more vocal. He is making a variety of sounds everyday, at home and in school. His sounds are different and multi-syllabic. The sounds are usually associated with something noxious�pain or something bothersome. But Anthony will also vocalize on command. I have asked him on multiple occasions to say �daddy� and he makes the same sound every time...and it sounds like �daddy.� Today, at physical therapy, Ellen was stretching his hamstrings. And since he hasn�t had PT in a week, they were tight. So, for the first time in a long time, Anthony cried. He also was trying to say Ellen�s name (we were telling him to say �Ellen, stop!�). He also said �hurts� to Ellen. Lately, we have been placing a lot of prayer requests for speech. What a window to the world that will give Anthony. What music to our ears it will be. It is coming. All of us who are with Anthony on a daily basis know it. Those who get to see Anthony infrequently are excited but don�t know the magnitude of it. Anthony will speak. He will continue to defy the odds set against him. He will be God�s messenger of hope and perseverance.

As confidently as I say that, my heart always worries for the thoughts Anthony has. I have thought a lot recently of something Carolyn said to me early on in this journey during Anthony�s transplant. She said that Anthony is very aware of what is going on in his body (when he had very early symptoms of MLD). I think about that and worry. How scared is he? What does he think about all that we are asking of him? I thing about other crazy things like, how old does he think he is? How long of time has passed for him? The return of his speech will reveal so much for me. I need answers to these questions, even the crazy ones.

On to a much lighter note! Matthew and Laura had a wonderful Christmas day. It started early and ended late, as all days should in Matthew�s eyes. We spent the day at Janice�s with my entire family, minus my mom of course, which was the added damper to the day. We enjoyed foods that reminded us of mom, things she made or things we know she would want at Christmas dinner. Comfort foods, so to speak. Wait, I said I was moving on to a lighter note, right? Well, be patient because I have to digress for a minute. My dad was in the hospital up to the day before Christmas. Last Wednesday, he passed out while Lisa was cutting his hair. After a few days in the hospital, it was concluded that the medication he takes for high blood pressure was dropping his heart rate too low. Two weeks prior to that, he was in the ER with complaints of dizziness. It all seems to be related. Fortunately he was home in time for Christmas. And hopefully, the problem is resolved.

Okay, back to the lighter note. December 29th and 30th mark 3 years since Matt and Laura�s transplants. Pretty momentous. Next week, January 3rd is Matt�s 9th birthday. Lots to celebrate this time of year.

Tomorrow we will celebrate Christmas with the Tomaino family. It�s my first time entertaining in the new house! It will be my first realization of our downsize! But we will manage to get everyone in. Fortunately, that�s the smaller side of the family! We temporarily fixed up an area in the basement as a playroom for the kids. It�s cozy down there and it gives them more room to spread out.

Gosh, I really wish I could get back in the routine of updating daily. It would be an easier read for you and less time consuming for me! Mike seems to think there aren�t many people who continue to follow the site on a daily basis. I�m not sure about that. I�m thinking more frequent updates will translate into more focused prayers sent to heaven for what we are in need of that day or week. I�m not making any promises but maybe the motivation will strike me. We�ll see!

Love
Michele

Sunday, December 9, 2007 7:51 PM CST

Hello All......and happy holidays. The Tomaino's have moved past the flood and are still transitioning into the new home. We will chip away until we get it to feel like the home we envisioned. Although we took a pretty big hit because of the market being so bad,it is official as of this past Thursday, our home in Toms River finally was sold and closed!!(yah) It definitely was a feeling of relief ( emotionally and financially) to put an end to that unexpected ride. Now to the kids.
Matt and Laura are doing exceptionally well. They have managed to not be sick so far this school year. Their bodies are healthy and we keep pumping the vitamins into them. Matt will be nine in a few weeks. Just prior to that, both he and Laura will hit the three year transplant mark. Thank God they have come so far over this time.We are blessed they are living normal lives once again. They are anxiously awaiting Christmas this year.
Although I would love to tell you Anthony is talking up a storm, he continues to tease us with his breaks in between. We know he wants to talk, but it has not come together for him just yet. It is so much work for him physically to make everything happen at the same time. Anthony continues to go at his own pace ( or God's pace), which can be very fustrating at times. The one thing I can say that has been great this school year is Anthony has been very healthy. Last year by this time, he had missed about 30 to 40 days of school. As of now, other than the trip to Upledger, he has only missed two or three days. Nothing spectacular to write, just slow and steady.
Michele just celebrated her ?? birthday last week. We spent the day together as a family......which doing that is something we will never take for granted.

Thank you for your prayers. We truly have been blessed from above.Please continue to pray for those in need.

Mike

Thursday, November 15, 2007 7:52 PM CST

So last I wrote we were "drying out" from the flood. thanks to all the help we had, the basement didn't turn out too bad. We are in the process of categorizing all the things we lost for the insurance claim which is no easy task. In perspective, it surely could have been much worse. And, after all, it's just "stuff"! There are much more important things to focus on.

So, to cut right to the chase, we have some good news to share. Anthony spoke! Now, I know what you're thinking...that's great but hasn't he done that before? This time was VERY different. Here's what happened...
Anthony has been having a lot of work done on his shoulders in physical therapy. They are using electrical stimulation to activate his muscles that he hasn't used in so long. To say the least, it's not comfortable, but it is making Anthony much more aware of his muscle groups. He is responding to it very nicely. But, as a result of the discomfort, his shoulders and arms get tight now and then. So, Tuesday night, Mike asked Anthony, "How do your shoulders feel?" And Anthony said...."They hurt!"
As an added bonus, I was able to record it at the precise time! So I have proof of Anthony's words and voice! Most everyone who heard it knew right away what he said. And by most, I mean only 2 people weren't sure. I wish I could put it on the web for you to hear. It is certainly precious. What Anthony said is so important on mainly levels. First of all, he put two words together to make a sentence. Secondly, he responded to Mike's question immediately. And most important, Anthony was able for the first time in nearly 3 years to communicate a feeling and need. I can't tell you how huge this is. And of course we cried and marveled at how far Anthoy has come and how grateful we are for that.

Today, Lorrie and I took Anthony to New York to see our alternative doctor again. He is as hopeful and confident as we are in Anthony's recovery and taps into his intuitive ability to put time frames on Anthony's progress. Three weeks ago, he said Anthony would talk in 7 weeks. Today, he said 4 weeks (which puts us in the same range). Lorrie pointed out that puts us close to Christmas. We've wished for many Christmas miracles in the past. So here's another one. Please continue in your faith with us for Anthony's continued progress. God and Anthony have not failed us. Slow and steady have been wonderful. Now we're looking for some pick up in speed.

So, Yay! for the recovery from the flood. Yay! for hearing Anthony's voice (and oh my god it was his voice!). Yay! for more progress. Thank you for your prayers and support. Even though we are home and thankfully healthy, prayers are much needed. God still has a lot of work to do and I'm sure He loves the encouragement!

Love
Michele

Saturday, October 20, 2007 10:01 AM CDT

Hi, everybody! Since I last updated, we saw Dr. Versendaal and he recommended new supplements for the kids. One of which he thinks will help Anthony recover faster. Anthony has been doing well with school and therapy. He continues to make small gains every week and I can�t ask anything more from him. School is really happy with him, too. He shows a lot of effort and they have become quite attached to him! Matthew and Laura are keeping busy and making new friends. We�ve had some play dates and made lots of new friends. We have the annual Speirs Halloween party tonight that we are all really looking forward to. Everybody takes this very seriously for there are prizes to be won (of which we have won the family theme 3 years running!) but this year we are just in it for the fun and after what happened last night, we could all use a little fun.

Yesterday�s rain taught us something we didn�t know about our new house�the sump pump doesn�t work. So, yesterday in a matter of just 2 hours, our garage and basement filled with over a foot of water. Over 75% of the things we kept in the basement is lost. We had lots of boxes that we hadn�t gone through since the move. Most all holiday decorations are gone. Our Christmas tree is gone. All the kids toys and games are ruined. Many things that were my mom�s are gone. Mike�s childhood slides are water-logged; we�re hoping they dry out. Our washer, dryer, hot water heater and furnace are down there; not sure if they�re working yet. The loss of personal property on top of the structural damage is pretty overwhelming. Our driveway is filled with all things lost. The insurance adjuster won�t be out until Monday the earliest. I can�t even begin to know how you put a price on things. And to top it off, I fell in the sump drain and broke a toe. So, I couldn�t even help with the clean-up. I can�t begin to say enough thanks to everyone who helped out. The entire Mauro clan (that includes you, Mike and Sue!), Dad and Joe Tomaino, Jimmy Keigher and some neighbors did so much. And the Point Pleasant Fire Department came to pump out the water.

You would think that after being hit with bad stuff over and over you would be immune to the emotions of it, but I can�t say that�s true. Don�t get me wrong, I certainly know things could be much worse. I am grateful for that. But I can�t help but think �enough already!� Well, enough �woe is me,� onward and forward. Like all things, we will get through this. Somehow.

Love
Michele

Wednesday, October 3, 2007 0:51 AM CDT

Wow, time really flies when you�re having fun�well, these days organized chaos is my idea of fun. I have so much to update you on since the last entry, which seems like ages ago. So, sit back and buckle up, it could get bumpy!

Since I last wrote, Anthony and I went to the Upledger Institute for a mini-intensive craniosacral therapy. Just so you know why we went there, here is a description of craniosacral therapy (CST from their website�

�CST was pioneered and developed by osteopathic physician John E. Upledger following extensive scientific studies from 1975 to 1983 at Michigan State University, where he served as a clinical researcher and Professor of Biomechanics.
�CST is a gentle, hands-on method of evaluating and enhancing the functioning of a physiological body system called the craniosacral system - comprised of the membranes and cerebrospinal fluid that surround and protect the brain and spinal cord.
�Using a soft touch generally no greater than 5 grams, or about the weight of a nickel, practitioners release restrictions in the craniosacral system to improve the functioning of the central nervous system.
�By complementing the body's natural healing processes, CST is increasingly used as a preventive health measure for its ability to bolster resistance to disease, and is effective for a wide range of medical problems associated with pain and dysfunction.� (you can get more info at www.upledger.com and click on therapies).

Anthony received CST for 3 hours a day for 4 days. He had 2 therapists working on him most of the time, Rebecca and Amy. They are also pediatric occupational therapists. They have a wealth of experience and knowledge. They were able to pick up on many things that have been trouble spots for Anthony, some of which they didn�t even know about. One specifically was they were feeling Anthony is experiencing frequent abdominal discomfort and cramping. For some time Mike felt Anthony had stomach crams but I wasn�t buying into it. But when they brought it up, it brought me back to Anthony�s post-transplant days when he had lots of problems with digestion and when the graft-vs.-host disease destroyed his intestines. When I mentioned this, Rebecca and Amy did a collective �ah-ha�. So, I was convinced (sorry, Mike!) you were on to something!). You have to understand that this type of treatment, like another I will talk about later, has an ethereal component to it. It is energy based so the therapist has to be in tune with the body and receptive to its subtleties. There is a bit of intuitiveness involved here. But Rebecca and Amy are quite skilled in the and, like I said, picked up on things that they have no knowledge of. They felt lots of restrictions in Anthony�s chest area, right where his scar form heart surgery is. They also felt restrictions along the left side of Anthony�s neck, which is the same area that Anthony is having tightness with in therapy. So, this trip was so worthwhile in that it complements the physical therapy Anthony receives and also validates it in terms of finding restriction in the same areas that Anthony is having difficulty improving. CST was described to me as working on an onion. There are many layers of tissue, so there can be many layers of restriction. When one restriction is released, there may be another restriction in the next layer. So, we continue to take Anthony locally for craniosacral therapy with Nejie (who came with Anthony and I, so she can further work o the restrictions Rebecca and Amy were working on). Since being at Upledger, Nejie says areas that were restricted are now less so. OH, and the best part�on our first day there, Rebecca said, �Maybe we can get Dr. John to come in on a session.� Dr John is Dr. Upledger if you weren�t paying attention earlier! And he did! He doesn�t usually work on patients. But Rebecca said that she knew when she told him about Anthony�s situation, he would want to work on him because he doesn�t like when the medical model messes up!! That was a real treat and added bonus. So, good stuff!

This school year, Anthony is in a different class with kids that walk and talk. He has especially connected with one boy in the class who looks out for Anthony. I can�t tell you how happy Mike and I are with this move. We pushed for it and we couldn�t be more convinced that it was the right thing to do. It is a more academic class (right up Anthony�s alley) and much more interactive. It is much closer to a classroom like Anthony knows one should be. He has a new aide this year you simply adores him(who wouldn�t?!) and takes great care of him. They aren�t afraid to push him and challenge him. It�s awesome!

IN a couple weeks, we are going to see Dr. Versendal. He is the chiropractor/nutritionist we were hooked up with through our chiropractor. He developed a method called Contact Reflex Analysis that can reveal where the body is �sick� even before it is. This is a description�

�Contact Reflex Analysis is a simple, safe, natural method of analyzing the body's structural, physical and nutritional needs. A deficiency in any of these areas could cause or contribute to various acute or chronic health problems. CRA is not a method of diagnosis. It is a means by which a health professional uses the body' reflexes to accurately determine the source of a health problem. �

Through this, Dr. Versendal has made recommendations for vitamin supplements to aid Anthony�s body with healing. Dr. Versendal is also a medical intuitive He can pick up on the body�s needs without assessing it. He, too, has pegged things about Anthony that he didn�t know. He even knew what side of Anthony�s heart had the defect. Mike didn�t even know that one! Every time we have seen him in the past and gave the recommended supplements, Anthony improved. So, we�re really looking forward to seeing him again. We last saw him in April

Now, on to Matt and Laura. Matt is getting over strep throat. But other than that, they are looking good. I�m really proud of them. They have adjusted really well to the move. One of the drawbacks for them is there aren�t any kids on the street we live. Understand there are only 5 houses on our street! But there are kids all around. We just haven�t ventured out enough to find where they all are! Matt has a friend form his class who lives down the street (a girl�surprise, surprise!). Laura has a friend from her class that we thing lives one street over. So, like I said they are around. But their schedules keep them busy all week long. Matt is taking a hip-hop class! If you know Matt, you�re laughing right now. If you don�t know him, know that his a performer waiting to be discovered! Laura is taking 2 dance classes on 2 different days (ballet and tap/jazz). And they both go to gymnastics. Add to all that CCD and the week is booked. The school is great. You can�t imagine how awesome it is to walk out the door and be at school in 2 minutes. So many kids walk to school and everyone is so friendly. The school is VERY parent friendly (something we�re not used to) and parents can hang around outside with the kids until the doors open. Matt�s classroom has Math Day every Friday were a parent can come in and help out; again, something I�m not used to. They even get to wear their costumes to school on Halloween! Yes, can you believe it? Their last school didn�t� allow it!! Did I mention how happy we are here?

So, my organized chaos I said in the beginning is trying to get this house to be a home. We�re still emptying boxed and trying to figure where to put things. I just started hanging things on the walls. It is slowly getting there. The hard part is unloading a house while keeping up the regular stuff�laundry, cleaning, cooking, activities, etc.

I promised pictures and I didn�t deliver but I will attempt to download them after I post this entry.

We go to see Trish Knight recently at an MLD fundraiser in Stone Harbor. It�s always awesome to see her! I got to met a family from Howell whose daughter has late infantile MLD. Their caring bridge site is www.caringbridge.rog/visit/reesebehnken. I think I posted it before. I can�t wait until I can be a part of an MLD fundraiser that talks about the cure that�s been found. Unfortunately, its rarity will always prevent the big research bucks so we�ve got to keep pushing ahead with little fundraisers. And Mike and I will always push ahead with any treatment modality out there because you know we will never succumb to this. We have always said that God has led us in the right directions and has led us to his earthly angels. His work is seen through the many people we have encountered. Not only through their knowledge and skills, but also through their motivation to help Anthony reach 100% recovery. All the people who work with Anthony approach him from a holistic model. They approach him lots of time on gut feeling (well, and with a little medical background!). What�s best is the people who are involved with Anthony are truly invested in him. There is no textbook for Anthony. He doesn�t fit in one, never did, no matter how much the medical world want him to. This is the kid whose significant MRI didn�t match his mild systems. This is the kid who continues to improve, albeit at a rabbit�s pace, not decline or stand still. This is the kid who puts forth an effort every time and when he doesn�t, is respected. Anthony is a role model for all of us. He is a lesson for all of us. The world wants to put everyone into perfect boxes. It doesn�t work that way. God created un in His own image but He made us all unique. There is a box for that. There isn�t a box for God�s work. The only �boxes� are the box seats for this amazing show2. A front row view of God�s plan at work. I know I�m start to sound goofy (it IS almost 2AM and I have written this entry 3 times because of computer glitches) but I have evolved so much through all this. I am a nurse with MEDICAL training. I pooh-poohed chiropractic care in my past (and my uncle is a chiropractor!). While I never believed in taking medicine for myself, that was all I knew to do to help my patients. I have done a 180. I have been exposed to so many different modes of treatment and have seen them be successful firsthand. I am proud to have evolved into a whole-body thinker. In fact, I was missing out on so much. Neither my Catholic upbringing nor nursing school fully enlightened me to the wonders o f the human body. How dare anyone think they know everything there is to know about what God has created? No one has even scratched the surface as far as I�m concerned. The wonders of the body are endless and Anthony has taught me that lesson. There is no doubt in my mind God is at work through Anthony. And while at times of weakness I cry out to God that it�s about time He heals Anthony, I understand to be patient. I understand that Anthony has already been healed; it�s just a matter of time before it is revealed. I�m just an audience member waiting for the dramatic, glorious ending. Thanks for watching with me. How blessed are we?!

Love
Michele

Sunday, September 9, 2007 11:46 PM CDT

I know I'm way overdue for a good entry but here's one that's short and sweet. I'll add more details this week. First of all, we are in Point Pleasant! We still haven't sold our house but we are enjoying the new one. We have lots of work to do but lots has been done already. It's close to being a "home". The kids are settled in. Matt and Laura love the new school. Anthony's bus ride to his school isn't much longer. Mike's commute isn't much longer either. More on this later.

This week, Anthony and I are traveling to Florida for therapy at the Upledger Institute. Anthony will have 4 days of intensive craniosacral therapy. I've talked about this before. Please pray that this week yields more miracles for Anthony. He does well with his weekly sessions. We're hopeful receiving it 3 hours a day will loosen up his restrictions to continue moving forward. I'm really excited about this. Definitely more on this later!

Please continue your prayers for our dear Carolyn and sweet Braeden. Prayers for Joey's future father-in-law who will be undergoing bypass surgery today. And please add a boy named Matthew Bell to your prayer list. He has ALL that has relapsed after transplant. You can visit his site at caringbridge.org/visit/matthewbell.

I'll be in touch this week!

Love
Michele

Friday, August 31, 2007 9:42 AM CDT

Hi all,

We moved into our new home this past Saturday. The 10 man crew who moved everything with three trucks ( myself, Brian Scott, Jim Masco, Ed Zak, Andrew Pantaleo, Eric Schaefer(my nephew), Pat Novak, Walt Reed, Rich Raney, and Mike Walsh) did such a fabulous job. Michele and I are honored to have such good friends and cannot say enough about how we appreciate what they did to help us. Although it has been hectic, we are so excited about this new beginning. The neighbor hood is beautiful, the school seems great and we are working non stop: cleaning, painting and getting the house in order before school begins. The kids seem excited about the new home. Even Anthony, when asked by Trish ( one of his PT's how he liked the new home, he did his best to try and give her a verbal answer. We will be getting our new phone # and address out to all in the near future.

Thanks for staying on board and I will keep bugging Michele to get some new pictures up of the kids real soon.

god Bless.

Mike

Wednesday, August 22, 2007 5:38 PM CDT

To say we have been busy is an understatement. We have been packing the house while also trying to keep it clean because we can get a call on a moments notice that someone wants to show the house. We have still not sold our house. Our realtor(Tony) has been working hard, but anybody who loves the house can't seem to afford it. We are going to move into our new home on Saturday. Most of the boxes are already there and we are getting two big trucks and alot of manpower to move the rest on Saturday morning. It has been hard to focus on the excitement of the move because our old house is still the concern. We have kept the faith that all will happen in time.
The kids are good. Laura has battled ear drainage for sonmetime this summer. We went for our six month check up at CHOP last week ( all the kids did great). The doctors there felt Laura's ear problem was from a small infection that did not clear up because she would go swimming and water would get in and keep the bacteria bredding.They put her on an antibiotic and it has already stopped. The transplant team commented on Matt's growth spurt and I believe they were impressed with all we told them Anthony has been doing. Although we don't like to go to CHOP, the doctors, nurse practitioners and nurses there always make it a pleasure.

We registered the kids for school yesterday. Anthony will still be getting bused to the same school he was going to this past year. The difference is he will be in an higher functioning classroom. The kids in his new room walk and talk. We felt that Anthony needed this because of his higher functioning cognitive abilities and the belief he will not push himself unless he has something to strive to reach.Michele and I have always pushed anthony hard and felt this was the right thing to do. Matt and Laura will be going to an elementary school with about 500 students ( their old school had a 1000). They are going from a school district with 12 elementary, 3 middle and 3 high schools to one that has 2 elementary, 1 middle and 1 high school. We are excited to be going to a small town that is already established.
Now if we can just sell our old house!
The summer has been a fast, hectic and healthy summer. We continue to count our blessings for all the good fortune that God has bestowed upon our family....... Please continue to pray and help the sick and the needy. We will try to update you shortly after the move.

God Bless.

Monday, July 23, 2007 12:04 AM CDT

It was a beautiful weekend here and a nasty washed out day today. Oh, well!

Anthony hasn't said any more words but he does show effort when we ask him to try. You can tell by his breathing pattern and mouth movements. It must be so frustrating for him. We will keep trying everyday to push him.

He's doing well with the combination of home school/therapy and outpatient therapy. I think Anthony was in shock the first week the therapists started coming to the house. They've invaded his safe place! But it's nice to have some new perspective and have some input on how to do things on our own at home.

Matthew will be starting occupational therapy this week. He did well with his physical therapy and regained strength and speed. Praying the OT does the same.

Laura got a haircut this weekend. The first real one since transplant. Her hair was halfway down her back but now it's just past her shoulders. All the kids have been on various vitamin supplements. One that Anthony and Laura take is for their hair. Since taking it, Anthony has had a lot of hair growth. Laura's hair has grown a lot as well but also looks the healthiest it ever has. Mike is tempted to try it but I'm trying to tell him hope was lost years ago!

Still trying to sell the house. Moving was a much more exciting thought when we figured on only one mortgage payment! Please Lord send the right buyer our way!

Matt and Laura are out to lunch and a movie with Joe and Pat. It is the better part of the day for them. I had to drag them out of bed and into the rain this morning to take Anthony to therapy. They weren't very happy but I bribed them with Dunkin Donuts. Works every time! The highlight to Matt's day was Ellen (Anthony's PT) pulled out his tooth. Another visit from the tooth fairy tonight. Maybe she can sprinkle some fairy dust on Anthony while she's here!

Seems like Carolyn is on the mend but still in need of prayers. 100% healing for everybody!

Love
Michele

Wednesday, July 18, 2007 10:25 PM CDT

This was an entry I was working on back in the beginning of this month! I am just getting back to finishing it and it seems like it all happened so long ago�.

Is that date right??!! I can't believe it's July already. It had been WAAAAYYY too long since our last entry. Lots of things have been happening. We sold our house. We bought a house in Point Pleasant. The people buying our house dropped out of contract! This just recently happened and have us reeling. They did their home inspection, we had a closing date and all of a sudden, they back out. In the meantime, we�ve been packing up like crazy so the house is in disarray. Now, we have to start all over and stage the house to resell. Not something we�re looking forward to. Our home sold quickly the first time. Please send your prayers that we make another quick sell. I�m not asking for the prayers as a material thing�more like closing one chapter and starting another. The move will be good for all of us. We are really looking forward to it. The house we bought is a cosmetic fixer-upper but so was this one and I think we did a nice job! We love the house. It has 3 bedrooms downstairs and 2 upstairs. That way, everyone�s happy. Anthony won�t have to be carried anymore and Matt and Laura can have their own private quarters. Aww, who am I kidding, Matthew doesn�t sleep in his own room now. I�m sure we�ll find him somewhere downstairs every night! Actually, both Matt and Laura take turns now lying in Anthony�s room. I guess we will have to keep an extra bed in Anthony�s room at the new house, too.

Anthony is working as hard as ever. But, with school being over, he is actually having less busy days. He gets to sleep in, something he likes. But he knows the pressure is still on to keep fighting, working and progressing. He is doing well with standing. He has developed good muscles in his legs. His butt muscles are kicking in better than ever. He is moving his arms more and more (right more than left). He is doing well on the lite gait, too�taking more steps and needing less noxious input (Ellen doesn�t have to press that hard into his groin area and sometimes doesn�t have to press at all). We started taking Anthony for cranio-sacral therapy twice a week. A massage therapist does this. She has been trained to use her touch to allow for free flow of cerebral spinal fluid. When there is an injury to the body, the flow of fluid is interrupted or changed which inhibits healing. When an area of flow is �released�, it can stimulate emotion and memory as well as promote healing. Right after therapy, Anthony has this look of calm. Truly to the extent where it looks as if he is going to start talking or get up off the table. It is a great adjunct to Anthony�s therapy routine.

Ellen and Trish (his PTs) are true believers in the benefits of cranio-sacral release (they are trained in it, too). You should all know by now that Mike and I will do or try anything that will help Anthony. And we are following God�s lead. He continues to guide us on the path to healing for Anthony and has led us to all the amazing people in our life. From the Ginny, the transplant nurse practitioner at CHOP who helps us with EVERYTHING, to Liz, our insurance case manager who has fought for Anthony to keep his therapy hours (without which he wouldn�t be this far), to Ellen and Trish, to Dr. Groves, to Dr. Versendal, to Nejie, the cranio-sacral therapist (she�s not a massage weirdo, that�s her real Armenian name!). Each person came into our life at the precise time needed. No one has been an accident. One example of that is recently we brought Anthony to New York to participate in a course Ellen and Trish were taking about how therapists should incorporate breathing techniques into their treatment. Trish helps the woman who teaches the course. Her name is Mary Massery and her niche is �if you can�t breathe, you can�t move.� Trish has been adamant that if we improve Anthony�s breathing patterns, meaning make them stronger and deeper, his posture will improve and initiating speech should be easier. Mary looked Anthony over and treated him, giving the therapists participating in the course suggestions of movement patterns and stretches. She treated him for almost an hour and a half. By the time she was done, his posture was greatly improved, his arms and shoulders were super relaxed and he maintained that positioning almost 2 days later. If it weren�t for Trish, we wouldn�t have met Mary. If it weren�t for Mary, we wouldn�t have realized that Anthony�s scar from open heart surgery 7 years ago was adhered pulling Anthony�s shoulders into flexion and preventing him for having proper posture. Everything leads into everything. Fortunately, we have been blessed to have such caring and intelligent people working with Anthony.

Okay, so now back to the current time of July 18, 2007! The biggest news I have to share is Anthony has said a few words this week!!! He has said �dad�, �Matt�, �yeah� and �mom� (I think!). He has said them on command, which is really a big deal. Now, Anthony has said these words before. It�s been a long time since we last heard them. The trick here is for Anthony to be more consistent and continue saying these words and more. That seems to be the hard part for Anthony but prayers and hard work will get him there for sure.

Matthew and Laura are doing well. They are making this to be a very long summer. They are never busy enough. They are always asking for a friend to play over. Trouble is they don�t have a very large circle of friends! Regardless, they look healthier than ever � all 3 of them. Laura turned 7 this month and is flaunting her Italian summer glow. Anthony and Matt are strutting more freckles than ever. I need to get pictures. They all look great.

Matt will be starting occupational therapy soon for some fine motor strengthening that seems to be affecting his schoolwork (they told me he had an awkward pencil grip but when I looked at his hand, I realized we held our pencils the same! It works for me!) Anthony goes out of the house for therapy 3 days a week and has 2 days at home through the school district. Mike has been off but will return to work this week. It will get crazy then for sure.

My dad is going to be moving in with Lorrie and Marty. He�s too depressed to live safely at home. They were good enough to say �Dad, live with us.� My dad�s not the easiest person to live with, though. We all knew he relied on mom but we never realized how much. It will absolutely be a challenge but everyone plans to help out. And we better or Lorrie may drop him off at someone�s doorstep one day! And no one would argue why!

We haven�t sold our house yet, but we�re still moving to Point Pleasant sometime in August. Moving is the best thing for us. A change of scenery and pace is needed. A better home layout for Anthony is a must. It�s definitely very stressful right now but I�m handing it over to God. Lisa told me something she heard Joel Osteen say�Do what you can and let God do what you can�t (or something like that). This is definitely a time for that.

So, enough of an update for you?! I know it�s a lot to take in so I�ll give you a few days to absorb it all! I apologize as usual for the lack of updates. We so appreciate your continued support and prayers. We need them a lot now for many reasons. But the driving force is always for Anthony. One hundred percent healing, nothing less.

I�m debating on changing over to the new CaringBridge page where everyone who signs on to the site gets an email alert for new journal updates. What do you think? I�m not sure how many are still checking in and I don�t want to lose anyone who may not be checking in often. Let me know your opinion!

I don�t have much in terms of update on Carolyn. Last I read in her guestbook is she is starting to see outlines of people and colors they are wearing but the blood on her brain is causing her to be confused. I know the multitudes of prayer warriors are pounding heaven to heal this very special woman. She has affected so many of us, hasn�t she? Love and prayers to her and her family.

Love
Michele

Sunday, July 15, 2007 10:57 AM CDT

I know it's been a LOOONG time for an update. But this one isn't about the kids. It's for a big prayer request from all you prayer warriors. Carolyn Wyman is in need of your prayers. I just got a phone call from Trish Knight who spoke with Carolyn's husband, Steve, this morning. The doctors taking care of Carolyn think she had a stroke and now she cannot not see. Her kidneys are still is very bad shape. Trish and I were wondering if the blindness is from the kidneys more than from a stroke. Either way, please, please, please bombard the heavens with your prayers for Carolyn. She is too precious on this earth to all of us who have been blessed by her great spirit.

Thansk, guys. I promise an update in the next couple of days!

Love
Michele

Thursday, May 31, 2007 6:23 PM CDT

On this beautiful day, all is good at the Tomaino home. All the kids are healthy and look real good. All the memories of the immunization nightmare are a distant memory.
Matt is counting the remaining days of school, which can't come quick enough. He is as active as ever, almost non- stop, like he was before transplant. Laura is smarter than ever and gearing up for her dance recital in a few weeks.
Anthony looks fabulous and continues to make big strides in therapy. He has developed an active push through both arms while in a standing position and has emerging activation in his hands and fingers.We saw activation in his thumbs for the first time in two years this week. He continues to impress the re-hab team and all those around him. He is pushed to the max everyday and continues to show his strength and perseverance each and everyday. He is an inspiration and a testimony of God's work in this world.
It makes me speechless when I think of all the blessings that have been bestowed upon our family. God has been so good to us and has guided and protected our family through this journey. I still struggle with seeing others suffer while we continue to be blessed. I have stopped questioning it and draw strength from all these blessings. All I can do is pray fore others who are suffering in this world.
Michele and I continue to heal also. We draw strength from the kids and marvel at the progress they have made over the last two years. We are indeed truly blessed to be the parent's of these three special children.
Lastly, I would be remiss to not mention someone who God has brought into our lives over the past year. Dr. Doreen Groves (chiropractor)started treating me for my back injury this past November. She has since become an integral part of the kids lives through the use of nutrition, chiropractic care and light therapy for Anthony. She also connected us with Dr. Dick Versedall, a world renown nutritionalist. They have both treated all the kids, and in particularly has helped Anthony on his road of recovery. We are again thankful to God for bringing two more special people into our lives.
Please pray for all those who are sick and suffer from a particular need in their lives.

God Bless.

Mike

Thursday, May 17, 2007 12:37 AM CDT

So, as usual, I have a reason why it's been so long since the last entry. But this time it's a really good one. We are having outbreaks of contagious diseases in our house. All thanks to vaccincations. All three kids received thier last set of shots (they had to be re-immunized after transplant because transplant wiped out all immunity they had from their baby shots). So, three weeks ago, they received the chicken pox shot and the MMR (measles, mumps, rubella). And in true Tomaino form, two of them decided to follow the low odds of actually breaking out with one of the diseases. Anthony has a VERY mild chicken pox...just 6 pox. He started last Saturday and they have already crusted. He said they weren't itchy and he didn't seem to be sick at all from it. But, he has been out of school and therapy so that's always a bummer. Laura has mumps! That one threw our pediatricians for a loop because it is VERY rare to get it from the shot. But we all know how we feel about that word "rare" . So, my poor baby is really hurting. She sleeps for incrememnts of 10 minutes and then wakes up from the pain of swollen glands. She screams if she THINKS you're going to touch her. It's truly pathetic to see her this way. She looked at herself in the mirror today and started to cry. She said, "I don't like the way I look. Everyone is going to laugh at me." I'm not sure how long she is contagious for or how long it will take to run its course. And then there's poor Matthew who has nothing. I say it that way because if there is one child who needs a break from school it's him. His teacher has been out on maternity leave for a couple months and he has been looking for every excuse not to go to school. He was praying to get the chicken pox! He has already been to the nurse twice today feigning illness. But, he is also very worried about Laura. He was crying a lot last night whenever he saw her crying in pain. He is such a loving sympathetic kid. He truly knows the meaning of empathy.

So, that's it. That's my big excuse! Sorry I didn't get a chance to wish all the beautiful women out there a happy mother's day. But truthfully, I just didn't want to acknowledge that day. Thank you to those who knew how I would feel and sent kind thoughts.

Congratulations to my niece, Melissa, on her graduation from law school! Family law, huh? Good to know there's a divorce lawyer in the family. Just kidding!!!

Congratulations to Brittany on finishing up chemo!

Okay, I'll check in soon!

Love
Michele

Thursday, May 3, 2007 11:26 AM CDT

Okay, I have to add just a quick note because I'm running out to pick up Anthony but I have to share this with all of you. First there is a new picture of Anthony on the lite gait that I talk about. So, the big news is Anthony took 5 steps with his physical therapist at school all on his own while he was in the gait trainer (similar to the lite gait)! HUGE news! HUGE progress. Please pray that it continues steadily. More later!

Love
Michele

P.S. to Patty...No brainer, Blake all the way!!

Tuesday, April 24, 2007 10:22 PM CDT

I can't believe I forgot to mention that Anthony turned 11 on Saturday!!! We had a great celebration with family. Anthony even ripped the wrapping paper off his presents! I've got to get pictures from whoever took them!

Monday, April 23, 2007
This entry is courtesy of the direct request from Mrs. Sandonato. See, I still listen to my friends' moms!

Wow. I guess I was teasing you by updating so frequently. Believe me, I had very good intentions to keep it up. But, as usual, life happens. That's pretty much why I never plan things. It never fails that whenever I plan a day, something happens to throw a wrench in it. The week before Easter, our house was plagued with the stomach flu. Laura started on Tuesday. Mike got it on Friday. Matt and I got it Saturday. And Anthony had it by Monday night. Matthew had it the worst. He had strep throat along with it. Then, last week, Anthony and Matt took turns needing to come home from school for various reasons...Matt had a fever, Anthony threw up. And all through this, we're trying to sell our house!

Yes, we're looking to move from Toms River. The reasons are many but all good. We need to go to a ranch-style home. Lifting Anthony up the stairs isn't fair to him or us. And getting a stair lift wouldn't be any more comfortable for him. We are also looking to move to a smaller town. Point Pleasant has always been my favorite and Mike is indulging me! It's always been our favorite shore place. I would just like to make it our home. So, through the weeks of ailments, we've been trying to put our house together to get it on the market. We just listed it this past weekend (we're trying on our own to start). We haven't found a house yet but I'm confident we will find the right place for us by the end of summer. Although I"m not sure if I'm more hopeful than confident!

Anthony continues to do well in therapy. Lorrie got good pictures of him on the walking apparatus call a lite-gait. But I haven't had her send them to me yet. He's been working on it the past two days off the treadmill and with A LOT of painful stimulus from his physical therapist, he is actually making stepping motions. She is pressing on an area in his groin. His step is a result of trying to get away from the discomfort but it is a muscular movement which is most important. They did this for a good distance. You could see the fatigue in Anthony's effort AND muscles, but the good news is we're tiring his muscles! Please focus your prayers on this motor movement.

The past week worth of rain and recent warmth is playing havoc on Matt's allergies. He was hurting today. Laura, too. But I think her's is a combination of being tired and allergy. They are off this week and have lucked out with nice weather. But I see rain is moving in midweek. A perfect ending :(

Stay tuned!

Love
Michele

Friday, March 30, 2007 11:12 AM CDT

**Another update AND new pictures...can you stand it??!!

Okay, so I think I may have spoke too soon. Anthony has had a productive cough since Tuesday! But, he's handling it fine. He hasn't missed school or therapy for it so that's a plus. He has his last cast on his right foot. Ellen did it to get a better stretch out of his ankle and she got the cast to mold just right yesterday. Hopefully he will be able to keep the stretch once the cast is off next week. We can always cast again down the road if he needs it. It's much better than Botox and since Anthony's muscles and tendons can take the stretch, it's even better. Anthony has been moving alot of different muscle groups the past 2 days. Ellen is very happy with it. She laughs and says "where's this coming from?!" His movements are disorganized but the goal is that Anthony will relearn all those movement patterns. He has been standing nicely, too. And when he is standing but starts to get tired, you can visibly see him push through his legs to stand taller. It's awesome. AND I was able to get pictures of Anthony going from a sitting position to standing. You can't appreciate the efforts Anthony makes to do that simple task, but you do get to see the strength in his legs. Trish is the therapist in the picture and she is just supporting Anthony's trunk.

Matthew and Laura had their promotions in kickboxing last night. Matt went to green belt, Laura to orange. They were very proud of themselves. Especially since Pop Mauro was there to watch.

Thank you for the prayers for Anthony's shoulder. His OT said his shoulder joint felt more stable yesterday! He has a lot of work to do, but God bless him, Anthony is the strongest boy I know!

Love
Michele

Tuesday, March 27, 2007 7:32 AM CDT

I hope you didn't fall off your seat when you saw this new entry less than a week from the last one!

Yesterday I was leary to admit that Anthony was sounding better. But today I am pretty confident that he has fought this one off quickly. Looks like you're right, Norah! But I do want to listen to his lungs later just to be sure! Matt and Laura are better, too.

I don't have any therapy pictures to post yet because the focus lately has been on Anthony's left shoulder. I forgot to mention last time that from not using his arm, the muscles and tendons are very weak and stretched so he is falling out of his shoulder socket a little. It's been like this for a while and we weren't overly concerned, but last week, the occupational therapist noticed it was a little worse. It has been giving him a lot of pain, too. So we're trying to support it as best we can. Ironically, he has been moving that arm recently. So, hopefully more active movement with strengthen the joint. It's very frustrating because we never want Anthony to be in pain or have to struggle any more than he already does. But the trooper that he is, he still is working hard. This week should be back to business as usual, so I'm hoping to get some good pictures! Stay tuned!

Thanks for all the entries! They inspired me to update more frequently. Keep those prayers coming!

Love
Michele

Wednesday, March 21, 2007 11:10 AM CDT

Yet again, it has been far too long since our last entry. In the meantime, I'll try to catch up best I can remember. My mom's passing is still very fresh in all our minds. My dad has good days and bad days. He is very lonely in the house. He doesn't think that will ever change. Matthew misses his nannie most every night. And Laura is always worried that the mere mention of my mom will send me into tears. But we focus on our hectic lives and keep mom a part of every minute.

A couple weeks ago, Anthony had pneumonia. I have to say, he handled it very well. It knocked him out for a few days, but he was over it in a week. This week, though, he, Matt and Laura have something going on. I don't know if it's allergy related or the result of change of temperatures. Anthony was fine this morning when I sent him to school, but an hour later I got a call that he was coughing like crazy. So, I had to pick him up. He's been fine since he's been home. A little congestion but not having any problem with it. Maybe he's learning how to get out of school! Matthew tried that this morning. "I'm too stuffy to go to school." Nice try...go to school! It's been a long March for Matt and it's going to be a long April, too. My favorite town of Toms River is not having a spring break until the end of April. Can you imagine not being off for Easter?! Mike and Anthony are. Anthony's school is in a different school district so he follows their schedule. Our family doesn't even have the same vacation schedule! I hate this town!

Despite having a cold (or whatever it is!), Anthony is still doing well in therapy. In the past, when Anthony would be sick, he take a few steps backward momentarily. This time, though, after misssing a few days of school and therapy when he had pneumonia, Anthony restarted right where he left off. I am so proud of him. More proof that he keeps getting stronger.

I plan to take the camera to therapy to try to capture just how well he is doing. Maybe today will be a good day to do that! Now, if only I can remember to bring the camera!

Please sign in and let us know you're still out there.

Love
Michele

Sunday, February 18, 2007 1:57 PM CST

Thank you to all our family and friends, near and far, who extended sympathies to us in one way or another. We truly appreciate your support. And the attendance at the 2 viewings impresed on me that my mom's love reached so many. The past couple of weeks have been very hard and I don't see them getting easier any time soon. I feel numb most of the time. I shake my head a lot because I just can't believe I don't have my mom anymore. It's something you are never prepared for. Pretty much, it sucks. My dad was staying with us and my brother for the first week but has since been back home. I don't know how he does it. I have a hard time being in their house for a few moments. We are all trying to keep him busy. He has come to watch Anthony in therapy a couple times. But the void is still there. When he mentions mom, it is with a quiver in his voice. Laura said to me, "what's Pop going to do without Nannie? She was the love of his life." Matthew, my emotional one, tells me every day he misses her. And Anthony was visibly emotional at the viewings and funeral. Lorrie and I just talked about how much more emotion there will be for Anthony when he is able to verbalize. He was very close to his Nannie.

But, with his new and devoted angel on his shoulder, Anthony has been doing very well recently. His physical therapists are so pleased with him. I asked Ellen what she makes of it. She just shook her head and said "I don't know where this is coming from." Anthony's head control has improved leaps and bounds. He still needs support but just a little. If anything, he needs the prompting of what to do. It's like he needs to be forced to remember how to do things. A theory that Ellen had a while back was that since Anthony was mobile before he lost his skills, he should have motor memory. That showing him how to move may trigger that memory. Working off this theory, his therapists (Ellen or Trish) will have him do something and repeat it and then have him help do it. For example, Ellen will have Anthony lying on his back on a large ball, kind of laying on his side. Ellen will support him and bring him up to a half sit while leaning and pushing into the elbow he is laying on. After doing this for 4-5 times, Ellen noticed that on the 5th or 6th time, Anthony was helping to push up. The first time she saw this, Anthony helped 10 And you have to remember that this is HUGE. By the next week, Anthony was helping 50 And it has been increasing since. I noticed this at home with reaching his arm out. I supported and extended Anthony's arm, like he was reaching for something. I did this 4 times and then asked Anthony to help. He did 70f the reach and return! The therapsits are carrying this over into having him point at picture cards. All this shows how Anthony is still a work in progress. He continues to amaze us. We know Anthony will recover completely. Seeing his determination is proving that to everyone else. Although I have to say, no therapist who works with Anthony is counting him out. They know he has much more to show. We have been truly blessed to have Anthony receiving physical therapy 5 days a week at Children's Specialized Hospital. Anthony is doubly blessed with Ellen and Trish, two very dedicated, determined, intelligent, experienced women. Can you tell we like them?!

The kids recently had their 6 month post-tranpslant check-up. Can you believe it's been 2 years?! Their immune functions are normal. They are still 100onor cells. And their enzyme levels are still normal and, in fact, higher. So blessed.

Laura just had her right ear tube replaaced. It fell out only 3 months after it was put in and she had lost of problems in that ear this past fall and early winter. Ironically, she was doing better and is now coughing since having it put back in! Matthew started with an ear infection this weekend. Seems allergies may be kicking up again. Hard to believe with these temperatures!!

Thank you again for your love and support. These past few years have been quite challenging (Lisa reminded us that this has been going on yearly since 2000-mostly with my kids or my parents). But our faith has strengthened and perservered despite it. Some days it's all that we have to get by. And all days, that's enough.

Love
Michele

Check out the new pictures

Sunday, February 4 2007 6:03 PM CST

Arrangements for Mom are...
Colonial Funeral Home
Rte. 88, Brick
Tuesday 2-4; 7-9
Wednesday 10AM at St. Dominic's Church

Saturday, February 3, 2007
Michele's mom, Frances Mauro passed away today, Saturday February 3rd at her home surrounded by her loving husband Joseph and her six children. Her love for her husband, children and grandchildren was in every breath she took, every meal she cooked and every hug she gave to her 15 grandchildren. It was an honor to become a part of this big family and watch Frances be the bond and strength that held it all together. Thank you Mom for all that you ever did for Michele, I and Anthony, Matt And Laura. We love you and will miss you.

All our love.

It gets harder and harder to update this site with interesting things. Don't get me wrong...Anthony continues to get stronger which is news in and of itself. But because his gains are so small, it's hard to convey his progress. I really wish I could have had a video diary because then you could see and appreciate how far he has come. This past week all 3 kids had 6 month follow-up visits at CHOP. Everything went well and so far all their tests are good. Thanks to Lorrie and Guy for coming with me and the kids. It was a long day with a packed agenda and the kids did great with it.

I am a bit distracted in this entry. A few weeks ago, my mom started receiving hospice care at home. In the past few weeks, she has refused supplement feeds through her stomach feeding tube. Last weekend, on my dad's 81st birthday, we all talked to mom about what was going to happen if her body didn't get any nutrition. Mom is aware of the outcome and is tired of suffering. As difficult as it was, we all gave her permission to do whatever she needed to do. Most importantly, and with much more difficulty, my dad told her the same. It has been over 15 months since my mom had the stroke and she has never been the same since. She has been in a lot of pain, more so recently. And I know it kills her to lay helpless in that bed. Today, all of my my brothers and sisters gathered at mom and dad's house for what we believe is our final goodbye. Mom is in a deep fog, although she occassionally tracks us. She isn't speaking and is breathing eratically. The most heart wrenching part of the day was hearing my dad tell her to go to the house of the Lord. Today is high on my list of the worst days of my life. This is very hard on all of us. We can't imagine having to make the phone calls that require us to say the words. I am reaching out to all of you out there to help us with this part. I will update this site often regarding my mom and pass on any information. And you can pass the word along to our friends and colleagues who may not follow this site. So many of you know the pain we have endured watching our oh-so-strong mother suffer so undeservedly. So you know what a tough time this is. We thank you for your friendship and prayers.

Love
Michele

Friday, January 5, 2007 7:06 PM CST

Hi all,

Happy New Year to all and a healthy and happy blessed 2007.
The Tomaino family feels blessed for the protection and healing Jesus Christ has bestowed on our family over the last year. As we move forward, our faith and determination has not lessened. So many blessings have come our way through old and new friends, therapists for Anthony,family and prayers from all of you who have kept in touch with us through this website.We thank you and hope you will continue to stay on as anthony continues on his path of healing.
The warm winter weather has brought enjoyment and of course colds and viruses. all the kids had something to deal with over the holiday, but are now healthy for the start of 2007.
It is refreshing to see Anthony handle colds now as compared to last year. Then, we would fear pnemonia,because of his added strength and stronger immune system, he is so much better prepared to fight them off.Anthony is still working with Ellen(his P.T.) and has now added Trish (who is excellent) the other two days of the week. Ellen felt Anthony needed to be pushed a bit more(she thinks like Michele and I), and he now goes to physical therapy more often. Anthony is so blessed to have both of these angels in his life. I think he wanted to show off for Trish, during her third session with him, Anthony pulled himself up off the mat into a sit up. Michele and I (along with Matt) witnessed this special moment. This kid works so hard to please others and try to re-gain the life he once had. I am so proud of him and tell him everyday.
Speaking of Matt,we celebrated his 8th birthday this past Wednesday. He was so happy and proud to be a year older. Matt seems to have regained all of his spunk and hardnosed personality that was drained out of him during transplant.
Laura is perkier than ever and rarely shuts up. She is always talking and is quite loud.
We are always reluctant to say specific thanks because we always leave someone out. So here it goes and please do not feel hurt if I miss you. Thanks to Joe and Kris Pelligrino for painting the kids rooms. They were so excited. to Dad and Pat for the weekly visits and meals. We have enjoyed them. To Michele and Todd....thanks for being there and understanding what we go through each day. Todd- it is nice to have you as a (new) good friend.Thanks for helping me out. To Ray Allender- thanks for helping carry Anthony upstairs as I tried to heal from two herniated discs in my back. To Susan and Guy..thank you for your frienship and helping out with the projects and watching Anthony and Matt so Michele could get out and shop for Christmas.To Mike and Sue Dilloian, can't have better friends than you two. To Lisa, Brian and Janice....thanks for helping Michele get the house in order and putting up the outdoor decorations. To Aunt Patti- for helping out with the kids and being back in our lives. To Domini- for driving the kids to school. To Lorrie and Marty for being there and going to Disney with us. You made it a more special trip.And to anyone else who as done something special for us or someone in need, God bless you.Please continue to pray for the sick and those who suffer from any need, especially Grandmom Mauro, Liz Caliendo, Ricky Caliendo, Brian Keigher, Brittany, and all the sick children in the world. Amen

Friday, December 15, 2006 7:37 AM CST

***CHECK OUT SOME DISNEY PICTURES!!!

I know it's been way too long when I still see leaves on the journal page. Sorry about that, but we had good reason. We just came back from a 7 day stay in Walt Disney World! I didn't mention anything about it because we didn't tell Matthew and Laura. Anthony was in on our secret. We picked up Matt and Laura early from school last Wednesday and said "we're going to Disney!" The look on their faces was priceless. They were even more surprised to open the hotel room door last Friday night and see Lorrie and Marty standing there! Well, Laura was asleep at the time but when she woke up and saw her Aunt Lorrie, her reaction was priceless again...."How'd you get here?!" The kids (and the grown-ups) got a special treat. Friends of my nephew arranged for us to ride on a float in the Animal Kingdom parade. But not just any float...Mickey's float! That was really cool. But our mouths still hurt from having to smile so much! Disney is very handicapped friendly so Anthony went on practically every ride. We even got him on "Soaring", a simulated hang-gliding ride in Epcot. It was truly amazing and Anthony visibly enjoyed it. Sometimes it got emotional. Going into attractions that were always Anthony's favorite and not being able to watch him enjoy them as he should was difficult. It brought back a lot of memories of Anthony's excitement, his voice, his expressions, his gestures. While I don't have any regrets going, I don't see us going back until Anthony is completely healed. But, we enjoyed every minute we had and totally exhausted Anthony. On our last day in the parks, Anthony was overwhelmed with a gathering of Disney characters surrounding him. He had so much emotion on his face. After taking many pictures, Anthony smiled several times (he managed to raise the corner of the left side of his mouth). And later that day, he said "dad" twice on command. He hasn't talked since all the seizure medicine had been started. That made it all worthwhile! So, we are home, recovering, getting back on schedule and preparing for Christmas.

We had Anthony's appointment with another neurologist before we left. She was very open-minded in our discussions and feels the goal is still to stop the seizures. She recommended trying a different anti-seizure medicine. We are hoping to start it soon.

But, so far, no doctor is able to comprehend how Antony is doing the things we see him doing while he is having so many seizures. Unfortunately, the medical profession isn't able to incorporate pure human and spiritual will in their thinkings. Bottom line is we hear Anthony say words, we see him communicate with his eyes, his physical therapist says he is creating new motor pathways and he manages to smile. And regardless of what we acquire from our senses, we have the faith that these things are happening. We don't need to see God's work but it sure does help. We certainly don't need doubt cast over it. That is for the non-believers. Our task it to open the eyes of the non-believers. Anthony's unbelievable task is to be a testament of God's power, love and healing. Our friend, Jim, says Anthony is a saint on earth. Whatever he is or brings, Anthony is the bravest, strongest boy I know. He continues to open my eyes everyday to the power of prayer and faith. I stagger many times, but I am always drawn back to God with the faith and confidence that He is taking care of this. It doesn't matter what my hopes or fears are as long as I keep that faith. I can't quote scripture, nor do I know how to pray through the scriptures. But I have bookmarked some passges that help me to remember that God and not medicine is our source of strength...
"Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" Isaiah 40:31
"He alone is my rock and my salvation; he is my fortress, I will not be shaken" Psalm 62:6
"Commit your way to the Lord. Trust in Him and he will act." Psalm 37:5

Okay, got that off my chest! The holidays get me reved up! Speaking of that, gotta get going. Just 10 more days till Christmas!

Love
Michele

Sunday, November 12, 2006 8:12 PM CST

Let me start by thanking everyone for the postive responses and suggestions. This seizure stuff has been a tough pill to swallow. We wish we could go back a few weeks and cancel that EEG. It put a damper on things. Temporarily, though. Several suggestions have led us to Columbia and we have an appointment on December 4. Anyone good at navigating in the city? In addition to that, we will reach out via email to Dr. Kurtzberg at Duke. Beyond that we are forging forward with business as usual. Anthony is only on Keppra and is no longer groggy or drowsy. We are getting back on track with the healing and Anthony seems to be on the same page. He did some great arm movements and head control in physical therapy last week. Praying and trusting each week brings more healing.

I haven't talked about my mom in a while and that's because I haven't seen her is quite some time. I stopped by today with Matt and Laura for a very brief visit. Mom's eyes lit up when she saw them. And she looked good, like she could get right out of that bed. I pray for that daily. Her wounds are still healing and need to be closed before she can be out of bed for a long time. I feel terrible about not being there more. I apologized to her over and over, but I know she understands.

Please keep Mike in your prayers. He hurt his back and has been in a great deal of pain these past few days. He is getting it looked at tomorrow. He is trying to help out as much he can, but I don't want him to risk making it worse. It's been a challenging weekend.

Thank you, Chris and Joe, for painting Matt and Laura's bedrooms. They are so excited about their "new" rooms!

If anyone can help out with the New York appointment, I would be much obliged!

Love
Michele

P.S. Casey, you can't get away from us! Maybe we can see you when we're at Columbia!

Thursday, November 2, 2006 8:02 PM CST

I know it�s been a long time and I beg you all to keep hanging in there with us.

Anthony came home from CHOP on Friday, October 20th. He continues to have seizures despite trying 4 going on 5 medicines. During the hospital stay when Anthony was being continuously monitored for seizures, he was having 8-10 seizures every hour. No medicine they tried did much to decrease the frequency. In fact, Anthony is worse off on the medicine than he was when we didn�t even know he was having seizures. They all make him really groggy. Today, Anthony had another EEG to see if this latest drug is working. Well, his EEG was pretty much the same. But what is infuriating me, what is driving me to reach out to you is a comment our neurologist said. He said with the way Anthony�s EEG looks he is probably not awake. Of course I challenged this with why is he answering our questions with his eye gaze and following commands? Now, get ready because this is the infuriating part�he said it�s probably coincidence!!!!!! I can�t wait to tell Ellen, Anthony�s physical therapist, that all this time Anthony has been doing what she asks, it�s just a coincidence. To tell his speech therapists that when Anthony tracks a field of 5 cards correctly, it�s coincidence. That when he eats or swallows or purses his lips when he doesn�t want anymore is coincidence. I am fuming. These scarlet letters of MLD make it too easy for doctors. It�s their box to put everything into. If only we could find a doc that thinks out of the box. Who LOOKS AT THE KID. Anthony�s first MRI didn�t match what he was capable of doing (remember the doctors saying they couldn�t believe a kid with that MRI could function). Well, what�s to say a kid with this EEG can�t be awake??!! That�s the difference between theory and practice. Call us na�ve or crazy, but we are looking at these seizures as a positive. Perhaps his brain is trying to recircuit. Perhaps his brain is trying to communicate and getting stuck. But, there is one basic notion here that rules above all. God Almighty is our physician. God has had His hand on (and in) Anthony this entire journey. He will not fail Anthony. He will continue to deliver his healing.

With that said (and yes, I feel better!!), we want to do right by Anthony. On one hand, we want to take him off the medications, as he is not the same kid since they started all these meds. On the other hand, maybe stopping the seizures will help his progress. Either way, I think it�s time we pursue a second opinion. I�ve done a brief search of epilepsy centers in the U.S. and it seems Cincinnati Children�s Hospital may be a good bet. Ironically, one of their leading neurologists did training at CHOP!! If anyone has any advice in this matter, please, please, please pass it along.

Matthew and Laura are fabulous. They are having a great school year so far, and they were very patient with this last hospitalization. It was very hard on them and thankfully it didn�t last long. Speaking of the hospital, that one week was the worst stay I have ever had there in the 8+ months we spent there 2 years ago. From the docs to the nurses, it was an awful experience. I don�t have any plans on being back there, but there ain�t no place like transplant!! Anyway, I digress.

Halloween was a hit. Janice and Ron�s annual Halloween party was a blast. Our family went as the cast from Peter Pan. Had Mike not dressed as Tinkerbell, we wouldn�t have won! But, the tradition continued and the Tomaino family took home best family costume. Three times in a row�I think we�re retiring next year! I need someone to email me pictures so I can post them.

Okay�thanks for letting me vent. Now I remember why I like this journal! I promise to update more frequently. We need lots of prayers now�for healing, for patience and for the right medical care.

Love
Michele

Friday, October 20, 2006 5:48 PM CDT

Update......Anthony and Michele are home and the Tomaino home is happy. Matt and Laura were so excited to see both of them. I felt like a little kid yesterday when I knew i would be picking them up today. Other than being a little snowed out from one of the drugs he took ( the doctors stopped it,but the effects are still mild), Anthony looks great. It will be nice to get back to our regular routine come Monday. It is demanding, but after a weeek like this,one can be reminded what a blessing it can be.
My thanks to Matt and Laura for being so good and helping daddy this week. Also thanks to Nana and Pop, aunt Patti and Lorrie for helping out and providing a few meals.
Not much else to say for now.......Anthony will be back to work proving the doubters wrong come Monday.
" One must believe the power of healing is yours to have the blessing bestowed upon you".
We will continue to climb and reach for the highest mountain with Anthony....having faith,God,hardwork and persistance as arew guiding force.

Please keep Liz Caliendo and Brian Keigher at the top of your prayer list. Also, pray for those for suffer any need in the world today.

Mike

Tuesday, October 17, 2006 11:41 AM CDT

Message Alert:

This past Friday, we went to CHOP for a one year neuro check up.Anthony had an EEG done and they found mild seizure activity. There are two types of seizures:The first is convulsive (Anthony does not have this type).This can be dangerous to a person and their body. The other type is called sub-clinical; which is the brain sending out messages(kind of like electrical sparks) that are not getting to their destination. This is what Anthony is experiencing.
They are supposedly not dangerous, but you want to stop them so they do not interfere with the re-learning of skills. They can get in the way of progress. It is like(in simple terms)trying to do homework quietly when someone is blasting music in your ear.
Anthony was admitted to the hospital that same night with the goal of stopping this activity with medication. Michele has been with him as I try to keep Matt and Laura's routine in order at home.As of this morning, the activity has been decreased by about half and there is a few more things they can try. Although Michele and I don't agree with him, Dr.Pierson's concern is Anthony will not be able to progress anymore if he is still having this activity.He is a good man and has been with us from the beginning, but Anthony has continued to prove the doubters wrong through his will, your prayers and our faith in God's healing process.

Please lift Anthony up with your extra prayers this week. I will keep you updated as much as possible.For those of you close to my wife...being at the hospital is very emotionally draining and physically tiring. If one has a chance, please reach out to her with a visit.

Also, please keep two others in your prayers, Brian Keigher, Jimmy's newphew, as they try to determine the best course of treatment for his brain tumor. Also, Liz Caliendo.....one of our prayer warriors and fundraising chairpersons, as she battles her threatening illness. Liz is one of the most caring and giving people I have ever met in my life. She is always looking to help someone who is ill or less fortunate. Please keep them and all those in need in your prayers at this time.

God Bless,

Mike

Tuesday, October 3, 2006 11:17 PM CDT

Sunday, October 8, 2006

We need you to add another child to your prayers. Mike's friend Jim Keigher's nephew, Brian, was just diagnosed with a brain tumor. He is at CHOP and will be operated on tomorrow.

So, cat's out of the bag. Or should I say dog. Yes, we have a new addition to our family, a puppy named Ruby. She is a "designer" dog, otherwise known as a mutt.
She is half Cavalier King Charles Spaniel, half Bichon. she flew in from Iowa and we have had her for two weeks now. She is very cute and very sweet. My intention was she would be good for the kids and maybe bring out something in Anthony. Unfortunately, Anthony hasn't been able to enjoy her because one day before she arrived, he got a cold. And the cold developed into a cough which led to near pneumonia. He made it through just 2 weeks of school and apparently didn't like the germs there. It has taken Anthony 2 weeks to recover. He just went back to school today.

Matthew and Laura are doing well in school. Having Matthew repeat the first grade is working out well. He still isn't fond of school but at least he doesn't hate it. He hated it last year because he was always chasing his tail from missing so much school.

My mom is pretty much the same. We are trying to find another live-in for her because the one we have is not taking good care of her. It's heartbreaking really.

I'm sorry this entry is so short considering it's been a month since the last one. I appreciate all the responses to my questions on the last post. It has helped me immensely. Please continue to pray that Anthony receives the healing God is giving him. We are struggling with the limited amount of therapy Anthony is getting school; please pray this is resolved next week.

Prayers to the Fox family on the loss of Kaliann.

Also, pray for a Howell family, whose daughter, Reese, was recently diagnosed with MLD. Their site is caringbridge.org/visit/reesebehnken.

And we pray we can help the Nobis family as well.

Love
Michele

Sunday, September 3, 2006 10:16 PM CDT

We�ve been gone so long from the site, I don�t know where to begin from where we left off. It seems so much time has passed and I can barely remember yesterday. I will certainly do my best to update you and keep you interested in our journey. It still is quite a journey and we have so much yet to accomplish. I couldn�t bear to loose any of your prayers.

In the past month, Anthony has continued to make small gains. He is still using the gait machine in therapy, where he is suspended, but now he is off the treadmill and going through the hallway. Anthony has shown the ability to push off his back foot and occasionally initiate a small step forward. He needs a lot of stimulation in his feet to get the pattern but he eventually gets it. He�s not walking yet but this is definitely a step in that direction.

In the past month, Anthony has actually said some words. He has said �mom� (of course, I wasn�t there to hear it), �daddy�, �Mashew�, �yeah�, and an attempt at Laura. Our excitement at these words was indescribable but you have to remember that with Anthony, it may be another month or two before we hear them again. So, it�s bittersweet. I don�t mean to sound negative. I�m thrilled when I hear the slightest attempt of a sound. It seems the weekend is when he makes the most vocalizations. I�m just being realistic about the consistency of things with Anthony.

In the past month, Anthony has continued to do well with food. He still gets his food pureed, but the amount he takes has increased. He is doing well with regular liquids in therapy and is trying lots of different textures. He loves peanut butter on graham crackers.

In all things Anthony is asked to do, he is relearning the entire skill. The nice part is that once he remembers the skill or pattern, he gets it. Like drinking regular liquids. He hasn�t had them from a regular cup so when he first tried, he forgot to close his mouth. After a few tries, he got it. I just shake my head. I marvel at how much of his recovery is based on memory of the skill. If it was only that easy though in all aspects. Anthony�s back, trunk, neck and shoulders are still very weak. So much of all the things we do everyday relies on these muscle areas. Head and trunk control is key to most all things. Anthony has come far but has so much strength to regain.

If we look back to last week, it�s hard to see the progress. But looking back months ago, we are so proud of Anthony. And so grateful to God for it. As much as I hated being at the hospital, I have to admit I miss the quiet time to reflect and pray. It�s hard to do that these days. I can�t rely on my everyday behavior to be my offering to God. That ain�t cutting it! Spare time is not a luxury. And what alone time I have, I�m not spending it in prayer as much as I used to. I have the attitude to give it all to God and I often ask Him to get us through this. But, I wonder if I�m detaching myself from things then. There is so much we can do for Anthony throughout the day but it is too easy to want to give him a break or let him rest. Often I know I back off from challenging him because I don�t want him to know failure. I want Anthony to always feel successful. I don�t know what he thinks of what has and is happening. It saddens me to the core when I think about it. I can�t imagine the sadness he feels or the frustration or the anger. We bring him outside to be around the kids, take him to the boardwalk, the stores. But we never know if we are helping or hurting him. Sometimes, I feel like we are back to some of the more gray times in the hospital. Not because of medical things this time but because of the unknown. Wanting so badly to see the progression just take off. Wanting to hear from Anthony what he thinks, wants, feels. Wanting to be totally faithful and trusting in God. Trying so hard to make that spiritual connection for Anthony. So, here�s the question I haven�t been able to figure out. If in prayer and spirit we can heal our body, how do we do that for someone who can�t ask for it? How do I get Anthony to tell his body he is healed? To tell God he is ready to receive his healing? To tell his body it is well and to take control over the sickness? Does it need to come from him? I am looking for lots of spiritual guidance here. I have been lacking that for a while and I am relying on those of you who have always inspired me before with your knowledge, scripture quotes and timing to lead me on the right path of healing for Anthony.

With that said, know that I count my blessings everyday when I look at Matthew and Laura. What success stories, huh? As much as I want to, I can�t feel sorry for myself. And as much as I want to send them away most days, I can�t hold them tight enough. Their memories of what they endured are fading. I�m grateful for that. Although today, I think I heard Matt talking to Mike about Linda, the cleaning lady on the transplant unit. Well, there we some good memories made.

Summer has flown by. No family vacations or weekend get-a-ways. Ours was filled with therapy for Anthony. All schedules revolved around that Monday through Friday. Pool days here and there but not nearly as many as I had planned. Lots of play time for Matt and Laura in the neighborhood but not as much get-together time with our other friends outside our street. I am so happy, though, that I finally reunited with my best friend Jean from nursing school and her family. It�s nice to be able to settle back into what is familiar despite what we have been through with MLD. It certainly doesn�t consume us, nor is it ever really mentioned. MLD has been a detour in our life; it isn�t our life. We will never attempt to learn to live with MLD; we will conquer it. We are conquering it.

I know this wasn�t as factual an entry as I have been giving recently. I know my past few have been more descript and to the point. I�m feeling more emotional I guess. More of a need to go back to my more prayerful times. I need to grab hold of that again. I know I will do that best with your support and encouragement�at least those of you who are still out there. Thanks for being so patient with the lack of entries.

Love
Michele

By the way, Anthony celebrated 2 years post transplant on September 1st!

Thursday, August 17, 2006 9:47 PM CDT

Hi,

The summer months have been very good to us. The weather is great and no illnesses. Last year, Laura and i did not get home until July 20th from the hospital. So it was nice to have a full summer this year.
We buried my grandfather last weekend. The kids were great at the wake and the service. anthony came Friday night, but stayed home on Sat. morning while Michele, Matt, Laura and I attended the service. The kids really loved there "Great Pop" ( as Matt would say " Gray Pop")even though they had not seen him in over a year and a half. The became so attached to him the summer he lived with us three years ago before going back to florida. It shows what a special man he was to all how knew and loved him. Pop.....thanks for all you did for me over thew last 40 years. Your kindness and wisdom helped shape the man I am today. God Bless you.
Anthony continues to progress in therapy. He is side sitting alot on his forearms to help strengthen his scapula. Ellen (P.T.) wants to try and get him in a walking device sometime in the fall (say October). his legs are strong enough to support his weight, but he has a long way to go with his upper body muscles and strength. Just this past weekend and aerlier tonight, anthony has been verbalizing sounds. He has even gotten out about four "yeas". they are very shallow, but he is tring to push the air through his vocal cords like he was taught by the speech therapist Melissa. My son is a hard worker and has more spirit than anyone I have ever met. Anthony has been getting five days a week of therapy and may be getting abit burned out. Luckily, certain things will stop as school approaches. One will be his schooling. He has been working with Mrs. Slavin (Judy) for up to six hours a week for the last two months. We are thankful she came into Anthony's life and will miss her.
Matt and Laura continue to excel. Matt is still at full force with his kickboxing classes and looks forward to going. I see how his legs and feet are getting stronger each week. Matt had never lost a tooth until last week and now it seems like all of them are loose. He is missing one front tooth and is about to loose the other one. Picture a "da, da" look. Laura is enjoying her summer playing outside with all the girls in the neighborhood. They sing and dance alot to the CD "High School Musical".
Michele and I feel so blessed and know that someday when anthony is 100%, there is a calling for both of us to do God's work at sometime in the future. For now, we focus on Anthony and his complete recovery.
Thank you for the continued prayers and checking into this site on occasion. Believe it or not, it is still so great to hear from you in the guestbook once and awhile.
God Bless you and yours.

Mike

Friday, August 4, 2006 3:15 PM EDT

Mike's grandfather passed away this morning. Pop would have turned 101 next month. We haven't told the kids yet...we will when burial arrangements have been made. Thank you for your prayers.

July 21, 2006

Not a whole lot to update, but I have a minute!

Anthony continues to press on hard in therapy. Three hours in a row at the hospital is exhausting for him, but he truly works hard. He started with Melissa, the new speech therapist. She is so knowledgable and has the right touch with Anthony. And she delivers in a soft but firm manner that we love. She is bringing a lot of new things to the table in terms of breath support and vocalization and coordination of a lot of different things that result in talking. It's amazing how we take for granted something like talking. It seems so simple but there are so many different things that have to work right together to make it all work. Melissa is a blessing for Anthony. It is truly amazing how God has worked to bring all these wonderful people to Anthony. Healing in progress!

Matthew and Laura have been SUPER busy working on this play production through the township. It is a musical revue of various Disney songs. It's getting a bit out of hand this week, though. Practice day and night for 7 hours total, in a non air conditioned school in this heat...it's suppposed to be over 100 tomorrow. The woman running it is crazy. She refuses to cancel practice for the safety of the kids because as she said, "there's a show to put on"...yeah, she really said that!!! Anyway, the show is this Thursday and Friday at 7 PM at Intermediate East. Matthew has already proclaimed, "I never, and I mean never, want to do this again!" Laura, the stage hag, is already planning on next summer.

There was an MLD conference in North Carolina this past weekend that Mike was trying to go to but couldn't find a travel companion. Our main desire to attend was to get Anthony's name to Dr. Kurtzberg, who is the transplant doctor in Duke pioneering new studies for myelin repair. She has transplanted a lot of MLD kids and our kids are a bit out of the loop. Fortunately, Trish was kind enough to keep us in mind while at the conference!

On a selfish note, Mike was the one appointed to go to the conference because I had tickets for Laura to see Hilary Duff this past weekend. Laura absolutely loves her and had an awesome time. My friend Michele and I took Laura, Matt, Brittany and Tiffany. The girls were totally giddy! And Matthew is now a reluctant fan! I'll try to post pictures soon.

My mom is the same. Her live-in has been away these past 2 days and the sisters are pitching in to take care of mom. It bothers mom that her daughters have to take care of her but we try telling her it's only temporary and that she needs to get her head back into prayer and get herself better. We heard a "praise God" out of her last night. That's a start!

Thank you for all the support, love and prayers. Please pray especially for Anthony to talk...it is coming, I know!

Love
Michele

Saturday, July 22, 2006 9:24 PM CDT

Just a couple things to talk about...

This past Monday, Anthony had his G/J tube changed to a Gtube. Up until the past 3 months, Anthony was getting his formula fed past his stomach into his small intestine (that's the "J" part of jtube, the jejunum). But over the past few months, Anthony has been getting all of his formula through his stomach and having no problems. Long ago when he had graft versus host disease and CMV throughout his intestines, his stomach wasn't moving food through. Now, everything is working well. So, he still has the same button-type tube, but if this one falls out, I can replace it at home. We are looking forward to the day Anthony doesn't need this tube anymore. He is taking 2-3 ounces of food per day and the same for fluid. This is a huge step in the right direction. Thank you God for getting Anthony another step closer to total healing.

Then, this past Tuesday, Anthony had botox injections into his pectoral muscles. They have been very tight for a long time. The right one wasn't too bad, but the left one was really limiting Anthony in any movement. He was also internally rotating at the shoulder because of it. The tightness in these muscles interfered with his sitting properly for an extended period of time and limited some of his range of motion in his left arm. Since Tuesday, we have seen lots of improvement. His left shoulder is level with the right (it would be trying to touch his ear sometimes!) and Anthony is more comfortable in his wheelchair and his position is greatly improved. Now, the therapists' goal is to strengthen his scapula (back shoulders) to overcome any tightening that may return in the pecs. Anthony has done well with botox in the past when he had it in his feet. We are saying some serious prayers that this is the only injection he needs there and he regains lots of movement and control in his arms. Again, thank you God.

I added a 2 new pictures...one of Laura and one of Anthony in occupational therapy with Janelle. See, you can photograph an angel! In the picture, Janelle has Anthony positioned on a large ball and resting on his forearms. Anthony's job is to take the weight of his upper body through his arms AND hold his head up in midline. This is one of the ways to strengthen his back muscles. This picture was taken on Thursday (thanks to Carla!). The effects of botox are allowing Anthony to so well with the exercise. Another step in the right direction! Thank you God!

There's a lot of praise for God in our house lately. We are counting every blessing that has brought Anthony so far. We are ever-mindful of God's presence in our lives, especially during the trying days. Thank you for picking us up over and over and delivering your child Anthony to total healing.

Love
Michele

Sunday, July 16, 2006 9:40 PM CDT

Wow. Where has the time gone? I know it�s been a really long time since our last entry but there seems to be very little time in the day for anything else but the kids. We try to do all we can to be sure each child is getting all they need and before you know it, the day�s over. Anthony�s schedule keeps us hopping the most. He has therapy Monday through Friday�3 days at Children�s Specialized Hospital and 2 at home. Each day is a minimum of 2 hours of therapy. Most days are 3 hours. Add to that school and his day is 4-5 hours long. Anthony started with a new teacher (Judy) as Carla retired this year and is taking the summer to enjoy her grandkids (or be exhausted by them, it depends on the day, right Carla?!). We miss her very much but she has sent Anthony a wonderful replacement. And Judy is smitten with Anthony, too. For as long as I can remember since Anthony was born, people have said, �there�s something about Anthony that draws me to him.� Judy has been sucked in. And Anthony responds really well to her. She worked with him for two hours straight once because he had lots of energy and was locked in to her lessons. We�re so happy to have a fresh new face working with him and bringing new and different ideas to the table. Speaking of that, praise God for hearing our prayers�Anthony will be getting an additional day of speech therapy at Children�s with the therapist that I know will work wonders with Anthony. I know God heard us and is telling us that this is the right time for her to begin with Anthony. Thank you for praying for this with us. It has been very heavy on our hearts lately. On the eating end, Anthony has really become interested in eating. About 3 weeks ago, we cut back on his tube feeding that he gets through the night to give him a chance to eat more. He now acknowledges he is hungry. We can even hear his stomach growl sometimes! He isn�t taking huge amounts, but he will eat lunch and dinner usually, and takes 1-2 ounces each time. He�s been on a Hawaiian Punch kick lately and sucks down 2 ounces at a time. One day, he ate � of a pudding pack. Yesterday, he ate half an applesauce cup. He goes in spurts but I get a lot of pleasure out of feeding him. Janelle is giving him more and more thin liquids (regular consistency like you would drink) during therapy and has been trying different textures with him. Anthony has had graham crackers, peanut butter, rice crispies, and this week will be trying cheese doodles! I�m so happy for him and so proud, too.

Our neurologist sent us pictures of Matthew�s MRI and let me tell you the improvement from his first one to this one a year and a half later is quite significant even to the untrained eye. It is truly remarkable what is happening in this little boy�s brain. When I asked the neurologist to give me a comparison on a number scale (thank God he puts up with me!) he would rank the first one a 6 out of 10 and this recent one a 2.5. I�m trying to give you an idea of how much improvement has taken place. As far as we know, this is unprecedented. The frustrating part is MLD is SO rare and SO under researched, we really don�t know what anyone else is seeing in follow-ups. After being blindsided 2 years ago with this horrible diagnosis, I was determined that what my kids would experience would not be in vain and that something good needed to come out of this. Well, maybe these MRIs will help accomplish that somehow.

So, Matthew has started taking kickboxing classes. It has been a great experience for him in many ways. The most important being that it is excellent exercise for keeping his legs loose and strong. The next being it is the first thing Matt has participated in that has captivated his attention and desire. It helps that the class is just a half hour long! Mike takes him 4-5 times a week. Matthew asks to go and looks forward to going each time. This is huge for Matt. Usually, he gives up on things easily.

Laura has been very busy working on her tan. She needs to be outside for a minimum of 10 hours a day it seems. She looks healthier than ever; in fact, I think she looks like the girl she was before she went into transplant. Her hair is healthy and growing, she�s up to 35 pounds (remember, she was 26 pounds this time last year!), and she has some meat and muscle all over. She looks wonderful. Laura had a great 6th birthday party. We had lots of people, food, and fun so I�d say it was an overall success. And the princess made out very well! Laura saw the endocrinologist this month for her hypothyroidism. Everything is going well so she doesn�t need to go back as long as the transplant docs keep an eye on her medicine levels. She has to take a pill everyday for the rest of her life and she has been great about it. If it weren�t for transplant, we probably wouldn�t have known her thyroid was under-active for too long a time. We are so grateful and blessed this was caught early.

We�ve gone to my sister Lorrie�s pool a few times this summer and have taken Anthony in 2 times so far. We have an above-ground pool, but Lorrie and Marty�s pool is inground and heated which makes it perfect for Anthony. The first time in, he was definitely scared and experiencing a new thing. The second time, which was yesterday, he was much more relaxed. In fact, we were able to get him to stand in the water and walk! Now don�t go crazy, he had support! I stood in front of him and had his arms around my neck and lightly held him around the waist. Lorrie was behind him guiding his legs. I would kind of rotate his hips to get the leg to swing and Lorrie would help him push the leg through the stride. The best part is Lorrie only had to help him with the left leg. Anthony swung his right leg in perfect time and all on his own. Anthony walked that width of the shallow end twice! It was truly amazing. He is remembering how to walk. We�ve seen him do this on the lite-gait apparatus in the gym with physical therapy, but it was so much fun doing it in the water. Matthew has been a fish this summer. He has become a pretty good swimmer and is being really good about using earplugs because he has the ear tubes in. He remembers better than us most times! And Laura is making strides, too. She jumped in the shallow end yesterday for the first time. And it only cost me $3!

My mom hasn�t changed much. Her wounds are thankfully healing but there hasn�t been much stride in getting her out of the bed. The therapists put her in the wheelchair when they are there but put her right back. I want to get over there one day when she is having therapy to negotiate more time in the wheelchair. I don�t anticipate my mom improving mentally or physically if she stays in that bed. I don�t mean to sound negative. I was just hoping she would have made more progress at home or even be more motivated. I can�t pray enough that I get my mom back. I miss her.

Enjoy the new pictures. They will probably be there for a while! My camera hasn�t been working so I wasn�t able to get pictures of Anthony in therapy like I wanted. I really want to get new pictures up of Anthony because he is changing so much�at least I think so.

Thanks again for sticking with us. New things are happening every day. Maybe we�ll surprise you with a more frequent update! Hey, anything is possible!

Love
Michele

Monday, July 3, 2006

HAPPY 6TH BIRTHDAY, LAURA!!!

Thursday, June 29, 2006
Hi,

Sorry for not updating the site sooner. Our life is on the go with therapy and trying to enjoy the summer. we don't go many places as a family, but all of us being together at home, especially in the summer is a great feeling.
Anthony- he cleared the pneumonia with no problem this time. It was not as bad, we caught it early (thanks Michele),and anthony is much stronger than he was this winter. He looks so good. His color is great, he is eating well and the intensive therapy is going well. I just started bringing him to therapy now that school is over and it is amazing to watch him work and see how much progress he is making with his legs, head control and overall strength. His brain is waking up slowly and his motor memory is starting to click. The other thing I noticed is how all the therapists know anthony ( even though he doesn't work with him) and are always commenting on how hard he works everyday he is at therapy. They respect that and see the progress he has made. Ellen and Janelle continue to work so hard and have been the driving force behind his success. He makes many more sounds now and you can sense the force behind them. Please continue to pray for a speech therapist that will make the connection and have the knowledge to get anthony to vocalize those sounds coming from his mouth.
Matthew- he is in his glory now that the summer is upon us. He is a ball of energy from 8AM to 10PM. He tires us out by the end of the night. I so admire his spirit and love for life. He takes nothing for granted and lives everyday to it's fullest. He is tan and has regained his muscular physique back ( must come from hid dad....ha, ha...no comments).By the way, Matt had his 6th month MRI done last weekend and the report read A SIGNIFICANT IMPROVEMENT in his white matter. That means the picture of the white matter of his brain continues to heal. Hopefully soon, we can say that his MRI is spotless. Thank you god for this gift.
Miss Laura- her hair is still growing longer, her olive complexion made her go from white to brown in about a week ( don't you hate those who never get red) and she now thinks she is a singing and dance star around the house. Her 6th birthday is on Monday. We will celebrate it on sunday with her many friends.By the way... her MRI was still clear as she and Matt hit the one year and a half anniversary of their transplants.

Just a few notes:last week we buried Mrs. Keigher after a beautiful ceremony and Latin Mass. Although all were sad, it was comforting to know this woman, who gave her life to her faith and God was going to a better place to be with her maker. Mrs. Keigher, thank you for your endless prayers for the children and for giving the world and me your son who was their for me emotionally and spiritually last year when the kids when through their transplants. A son is a reflection of his mom....which tells me everything about what was in your heart.
Michele's mom is doing somewhat better. Her two wounds on her back are slowly healing. Andie (remember her) is now Fran's PT as has her out of bed alot more than she has been since last November. She can still use your prayers for more strength and spirit. Mr. Tilley ( my grandfather) is still holding his own. My brother Joe is trying to make plans to have him flown up from Florida to a nursing home in this area. ( not easy). continued prayers for the sick and all those who suffer any need.
Lastly, my thanks to all the counselors and secretaries at Jackson Memorial High School. We are being split up this fall because some of us will be opening a new high school(I am excited to be on thew move). None of you could ever imagine how difficut it was to come back to work this past year. All of you gave me space when I needed it, and listened if I wanted to talk. You excepted some days when I was outgoing and never questioned the quiet days. I thank all of you for understanding and never questioning. You are all the best.........to Helen Erbe, we have been together for about 14 years as counselors. Thank you for your friendship, advice and always listening. I will miss you. and to Walter Reed ( no, not the hospital), thankyou for your frienship and having the ability to always make me laugh. You to i shall surely miss.Also to my boss Laura. Thank you for the flexibility and understanding this past year when it was needed most.

Will try to get pictures up of the kids ASAP.
God Bless

Mike

Friday, June 16, 2006 11:40 PM EDT

UPDATE FOR FRIDAY, JUNE 16

Love and prayers for the entire Keigher family. We are mourning the loss of Martha Keigher but her love for the Lord will lead her to His kingdom. As Laura said, "She's an angel now and angels check on us when we're sleeping."

Anthony has pneumonia. It is definitely much more mild than the last one that landed him in the hospital. So far so good managing it at home.

Wednesday, June 14
Just a quick entry for now. Mike brought home some germ from the high school and he, Anthony and I are sick with sinus and chest congestion stuff. I'm praying so hard that it doesn't linger too long for Anthony. He and I seem to be on the same course, though, thank you, Lord. Last night was Anthony's worst night yet so I'm hoping that means the start of getting better.

Our hearts are heavy this week as Jimmy Keigher's mom is so very ill. She just came off the ventilator last night and received last rites Monday. She actually smiled when she heard the priest. Mrs. Keigher has been a steadfast Tomaino prayer warrior from the very beginning and we won't let her down now that she needs us. She is in our thoughts and prayers daily. As is Keig (Uncle Monkey to the kids). He's been a true friend throughout our ordeal as well as throughout Mike's life. We are definitely here for you.

Anthony is plugging along in therapy. Three days a week, three hours straight each day. He hasn't connected with the speech therapist, yet. Please pray for this in particular. Anthony was making lots of sounds this past weekend. His voice is there and the words are trying so hard to find their way, I know it. Please, dear Lord, send the right person to Anthony to help him with this.

Matthew and Laura got their last of their immunizations for now. Four for Matt and five for Laura. They are very pleased to know they won't need anymore until at least December!

Thanks for checking in. Your thoughts and prayers and support are always needed and appreciated!

Love
Michele

Monday, June 5, 2006 9:07 PM CDT

Okay, I�m sure you�re wondering where we�ve been. The old adage �no news is good news� certainly fits but we�ve been busier than ever for all good reasons. We also wanted to update you after the kids� check-up and give you all the details at once.

We went to Phillyadelphia (as Laura calls it) today for our every-two month visit. To give you an idea of how happy they are about how the kids are doing, we don�t have to go back until December! What a long way they have come! Anthony saw the ENT doctor about his sinuses and sees no reason to do anything to them. Anthony hasn�t had any sinus issues since March and we�re hoping the summer puts an end to it. Dr. Aplenc has been following the kids since the beginning, so obviously he has seen them at their worst and best. I�m pretty sure he was quite impressed today. I think Laura impressed him the most. She is looking healthier than ever and almost 35 pounds! Five pounds really makes a difference on someone her size! I think the word Dr. Aplenc used was �amazing� when he saw and heard the updates about the kids, especially Anthony. Anthony�s gains aren�t very obvious if you only see him for a few minutes, but Mike and I are certainly proud to brag about all he has been doing and be sure everyone knows the word �never� isn�t in our vocabulary. While it is awesome to know we don�t go back for 6 months, there is a sense of loss of talking with the people who have become such an integral part of our lives these past 2 years. Ginny, the nurse practitioner, has developed such a bond with the kids and makes every visit there pleasant. It�s so obvious she loves what she does and is so good at it. We have been very blessed. Thanks for doing all you do for our kids. And thanks to Dr. Aplenc for always looking out for the kids� best interest and your persistence in getting them there.

Our schedule is much more hectic now that Anthony is doing outpatient therapy. We go Monday, Wednesday, and Thursday for 3 hours each day (we are going tomorrow to make up for today). Anthony and I have to leave by 8:45 on those days, so it�s good training for me for the fall. I don�t know if we mentioned it, but Anthony will be going to school this September at Regional Day School in Jackson. It is a small school for kids with special needs. There is a lot of variety of children who attend there. A lot of kids walk and talk which will be great for Anthony. The school is small, but most importantly, looks like a school. You may be surprised to know that most handicapped schools don�t. But Anthony knows what a school looks like so when I talk about school, I know he has a picture in his mind. He will get all therapy there as well as curriculum. The class sizes are very small and everyone we have met are super nice. In fact, I think it�s fate that Anthony go there, because the learning consultant, unbeknownst to us, has been a Tomaino prayer warrior since the beginning.

Getting back to outpatient therapy�Ellen, Anthony�s physical therapist, works him to the bone. And we don�t want it any other way. She stretches him intensely, challenges him intensely and reaches for the sky. She puts him in this gait trainer, which is a device that has a harness that suspends Anthony and positions him over a treadmill. Two therapists move his leg in a walking pattern on the treadmill. Two weeks ago, Ellen said Anthony was initiating 50% of the strides. And last week she said he was doing even better. Don�t get me wrong, he is not ready to walk, but this shows he has memory of a walking pattern. The therapists talk a lot about �motor memory� meaning because Anthony was walking, talking and moving before he lost that ability, the way to do those things is somewhere is his brain. The trick is waking it up, waking up the muscles, or finding new ways to get the messages where they need to go. Anthony is showing progress in all areas. Especially eating. Eating tires him out easily (there�s a lot of work involved in that, believe it or not), but he has been having more endurance lately. He eats up to an ounce at a meal, which sometimes is more that you think. For example, an ounce of pureed hot dog is equal to almost half a hot dog. Janelle, his occupational therapist, has been giving him thin liquids and Anthony is swallowing them without any difficulty. Anthony is just starting speech so we are looking forward to him making progress in that area next.

Mike and I reflected today about how blessed we have been. Especially by the people who have come into our lives and selflessly embraced us and our situation. Some take on more than others but we are eternally grateful for any amount of help we have received. One who has taken on quite a bit has been Anthony�s teacher Carla Friedman. At a time when it would have been okay to run in the opposite direction, Carla came into our house with the determination to make a difference and that she has certainly done. Anthony�s learning needs are unique to say the least, but Carla absorbed any and every information she could to make Anthony successful. She has brought to Anthony the things Mike and I haven�t had the time to do. She has worked with every therapist, with every piece of equipment, and utilized every technique she has learned. And Anthony is the better for it.

Special thanks to Dad and Pat, Aunt Patti, Mrs. Feeney and Michele for helping out these weeks when Anthony goes to therapy and Laura is home. I couldn�t have done it without your help!

Thanks to the Jackson PBA for choosing our kids to benefit from their charity soccer game against the Jackson teachers (this weekend, Saturday, June 10 at 6PM at the Jackson Municipal Complex). That town has been very good to us.

Special prayers for Carolyn, our dear friend.

Continued prayers for Grandpa Tilley and Martha Keigher.

That should hold you for a while! Keep the thoughts and prayers coming for complete and total healing!

Love
Michele

Friday, May 19, 2006 7:13 PM CDT

Anthony started an intense outpatient therapy program at our local rehabilitation hospital this past week. He goes three days a week for three hours straight and is bombarded with physical, occupational and speech therapy without a break. He also is getting PT at home the other two days of the week. Ellen is his home/school therapist and also his rehab therapist. She is very aggressive and pushes Anthony to see what he is capable of doing. We are so blessed she has come into his and our lives. Janelle will still be his OT, just swithching from home therapy to rehab, because she also works at the center. He has been tired, but it has been so good for him to leave the house daily. He prods along with the changes and is working extremely hard. He continues to progress with the eating. His amounts haven't increased much,but his chhewing and muscles around the mouth are getting stronger. Mom(Michele) is a natural...remember she has rehab background as a nurse! I so enjoy watching her feed him. The energy and hope in her eyes sparkle when he eats.Thank you for that dear. Anthony continues to get stronger and look better each day. Especially now that winter and its germs are gone.
The only unfortunate thing about Anthony going to outpatient is he will not have Andie anymore as his PT. Andie, you have been with us from the beginning and Anthony would not be able to move to the next level if it was not for you. You brought Anthony from nowhere to this point...the hope that lies ahead is because of your hardwork. Michele and I are indebted to you and consider you an extented part of our family. We believe God brought you to us through prayer because of the special lady you are...thank you and God Bless. Pleasr do not be a stranger.
Matt is still the energizer bunny. He is doing well. He is playing T-Ball once or twice a week and does karate Saturday morning. Laura is doing very well also. She is dancing and also doing karate. Her stubbornness gets stronger as she gets stronger (wonder where that came from....Oh, Hi.. MICHELE)
Michele and I feel so blessed for our good fortunes. We still sometimes wonder why we have been given so many blessings(including all of you). I guess the best thing to do is just be thankful, try to help others in need and give the thanks to God, because we know we would not be at this point w/o the graces he has bestowed on our family.
Continued prayers for all the sick and needy....especially Matha Keigher(who is very ill), my grandfather,,Art Tilley, and Michele's mom as she transitions home ver soon.
god bless you and your families.

Mike

Wednesday, May 10, 2006 10:13 PM CDT

I think there may have been some confusion in the way I updated the site, because I did report that Anthony did well with his swallow test. In fact, I have been feeding him once to twice a day since last Thursday. By using his eye gaze with "yes" and "no" cards, Anthony has told us he is more thirsty than hungry. But, he still takes the food! I think hot dogs are his favorite right now. And, true to Anthony, apple juice is still his favorite drink.

Matthew did great getting the tubes in. We did it in CHOP's Voorhees surgical center. It was super fast. Matt got nauseous in the car on the way home from the anesthesia and pain med he got. But after he tossed his cookies (donut, actually!), he was his old self.

Laura is still dealing with ear drainage, but the drops are still keeping it at bay. It also is showing us that her immune system is stronger by not having a fever with it.

Mom will be coming home next Thursday (May 19). We will have 24 hour help for my dad until, hopefully, things get better. I can't say much about how she is doing because, unfortuantely, I haven't been able to see my mom much at all. I am dealing with that guilt. I know in my heart she wants me home with the kids, especially Anthony, but it doesn't make me feel any better. Things should be easier for me when she comes home. I hate not being able to help. Anyway, she's not the same Fran everyone knows, but my prayers are endless for her return.

That's all for now. I know it's short, but it's late and I'm still in shock about Chris leaving American Idol. Not important in the sceme of things, but he gave me something to look forward to every Tuesday night. Gosh, I hope Mike's not offended by that one!!

Love
Michele

P.S. I'm not sure when this turned into the Kristen Dilloian post-communion venue, but I hope Sue is glad she got all that off her chest!!

Thursday, May 4, 2006 12:40PM

Our thoughts and prayers are with the entire Neues family as Steve's mom, Rosemary Neues, passed away Tuesday, May 2. We're here for you in any way we can be. Love you!

Wednesday update...5:30PM

I can't wait to spread the news that Anthony did sooo well today! He is NOT aspirating his food or slightly thickened drink (aspirated means goes into lungs). Anthony took spoons of pureed macaroni and cheese and a thick puree of chicken and swallowed them beautifully! He drank nectar-thick (picture the juice in a can of fruit cocktail) apple juice from a cup and swallowed that beautifully as well. Mike and I will learn what techniques work best with Anthony for feeding and soon we will be able to feed him during our meals. He is a long way from getting rid of the stomach tube but this is a HUGE start! My emotions got the best of me as I watched the screen and saw him swallow the barium-filled food/drink. You have to remember, Anthony hasn't eated since November, 2004. This is a giant step for a kid who hasn't quit and just keeps getting better and better. Janelle was with us today and fed him his food and drink. I couldn't have done it without her. What I saw today was a clear reminder for me that miracles come in the form of people. Janelle is one of our miracles. We are so blessed. Thank you, Lord, for Your presence in our lives and for the amazing people You have sent our way. Halleluia! Anthony can eat!!!

Some more brief updates...
Matthew is having tubes put in his ears this Friday. He is doing great in physical therapy and just loves Ellen (another of our miracles).

Laura has another ear infection but not too bad. She didn't get a fever with this one and the drops seem to be keeping things under control.

My mom is unchanged for the most part. She will be coming home mid-May, and I'm hoping that is when things will improve for her. Home worked wonders for Anthony.

Mike's grandfather still has a lot of fight in him. He hsan't gotten worse and he was just transferred out of hospice to the hospital to try to treat him better medically.

Mrs. Keigher is fighting hard against extensive lung cancer. We keep her in our prayers daily and I thank you all for doing the same. Jim (her son) has been an amazing friend to Mike, especially since the kids' transplants. He has helped Mike emotionally and spiritually and has been a constant source of support for him. Lifting up his mom in prayer is the least we can do.

Thank you, faithful followers. Thank you, Jesus, for today. We are filled with lots of thanks and blessings today.

Love
Michele

I know I haven't updated in a while, but I'm counting on the remaining followers we have to say a special prayer for Anthony at 2PM today. Anthony is having his swallow test done then. This will tell us if he is swallowing food properly. It will show us if the food is going into his stomach (please, please, please) or his lungs (boo hoo). This is a very important step for Anthony and obviously we want him to be successful. Please keep him in your thoughts today. Later today, I will tell you how we make out and give a full update then. Thank you so much!

Love
Michele

Saturday, April 15, 2006 9:34 PM CDT

Prayer Update: Please pray extra hard (we need a miracle)for Mike's grandfather: Mr. Tilley and Jim Keigher's mom : Martha Keigher. Both are very ill and need the prayer warriors to fllood the heavens with words of healing. Thank you for keeping all the sick and needy in your prayers at this time.

HAPPY EASTER!!

Praying that this glorious day brings us continued blessings through God's grace.

Anthony is getting better each day. Slowly, but that's what I hear about this type of pneumonia. He hadn't needed oxygen since Friday night. His chest congestion is breaking up but he is still very junky.

Matthew and Laura are anxiously awaiting the Easter Bunny. We are thankful for these beautiful days this week. It makes up for starting the break in the hospital.

Mom is hanging in there. Her appetite had improved, but she's back to not eating. My dad is sad about her not being home for Easter. It does stink.

Time for new beginnings for the Tomainos and Mauros. We're ready.

Thanks for the prayers. Keep them coming.
Keep up the prayers for our other family and friends, too...
my mom
Mr. Tilley, Mike's grandfather
Mrs. Keigher
Mrs. Neuss
Laura's friend, Brittany
Norah's friend, Dot
Braeden Knight
The Wyman family
Rose Platas' mom

Matthew wants us to add his friend Maddy Crewe to the list. She had to get stitches by her eye today. It warms my heart to hear my kids talk about praying for others. They have a hard time parting with their toys for the poor but they are very generous with the prayers!

Love
Michele

Tuesday, April 11, 2006 8:06 PM CDT

Anthony's home!!!

He is off oxygen. His breathing is a little better. He looks better overall. He still sounds junky and will need neb treatments around the clock, but there's no place like home! And, he even went back to his therapy routine. Anthony had PT this evening! He really needed it because being in that hospital bed just makes him tight. Moving around will be the best thing for him. We will still take the help, though! So, please give us a call!

Matthew needs tubes! His ears are still filled with fluid and his hearing test is significantly being affected by it. He is scheduled for May 6.

Laura's ears look good and her hearing test is just about normal. She needs some more for a couple days to unclog the left tube. Other than that, the doctor was pleased with her ears.

Transplant wise, Matt and Laura look great. They had immune function labs drawn today which will give us some information on how they are recovering.

Thanks for the prayers. Keep them coming.
Keep up the prayers for our other family and friends, too...
my mom
Mr. Tilley, Mike's grandfather
Mrs. Keigher
Mrs. Neuss
Laura's friend, Brittany
Domini's step-father just passed away
Norah's friend, Dot
Braeden Knight
The Wyman family
Rose Platas' mom

Love
Michele

Monday, April 10, 2006 10:51 PM CDT

*Addition to prayer list. I will keep this list on the site for the entire Holy Week.

Anthony is still in Jersey Shore. He isn't any worse but the doctors want to be precautionary. Unfortunately, the doctors always seem to examine Anthony right after a treatment so his breathing always looks worse than it really is. Anthony is still on oxygen but the pulmonologist says he isn't worried about that. He just wants to see an improvement in Anthony's breathing pattern (he is breathing heavier than usual) and hear an improvement in his lungs. Anthony is getting 2 antibiotics through his feeding tube and neb treatments around the clock (3 different ones!). Mike and I have been alternating staying overnight. But with all the neb treatments and Anthony not sleeping as well as usual during the night, the extra hands are helpful. Not to mention the nurses here don't help much, either. They offer, but I think they're counting on us saying we'll do it ourselves. Nothing like the nursing students I taught!

I have to say I was a little nervous about coming back to the hospital tonight. It's hard being in the hospital but harder being home and not seeing for myself how things are. And the nurse in me always go to the worst case senario.

Matt and Laura are devasted Anthony didn't come home today. They are even more upset that Mike and I are staying. I'm sure they know that means Anthony is pretty sick. I don't give them enough credit that they worry as much as we do.

Tomorrow was our transplant follow-up. Matt and Laura will still go. They are scheduled with ENT, too, to recheck their ears and hearing tests. I'm not sure which one of us is going, but, thankfully, Lorrie had been planning on coming, too.

Please keep the prayers coming. I will feel much better about Anthony when he is off oxygen. Until then, I know I will be very cautious about how he is doing.

Keep up the prayers for our other family and friends, too...
my mom
Mr. Tilley, Mike's grandfather (he has a very bad infection in his foot; talking about amputating his leg; the man is 100!)
Mrs. Keigher
Mrs. Neuss
Laura's friend, Brittany
Domini's step-father
Norah's friend, Dot
Braeden Knight
The Wyman family
Rose Platas' mom

If I've missed anyone, please let me know!

Personal thanks to Lorrie for taking care of Matt and Laura through this. Lucky us, this happened over spring break. Well, not lucky. What a way to spend a vacation!

Love
Michele

Sunday, April 9, 2006 9:13 PM CDT

It�s a prayer request Sunday night. Please pray extra hard!

Anthony has been in the hospital since Saturday. He�s at Jersey Shore. He has pneumonia. So far his blood cultures are negative. It may be viral. He is getting a little oxygen by nasal cannula and rests when the cough isn�t aggravating him.

Jim Keigher�s mom (Uncle Monkey�s mom to my kids) is also at Jersey Shore with fluid from her lungs and a lung mass. She is having surgery Monday morning (10 AM) to try to stop the lungs form leaking and see what�s going on with the mass.

My friend, Norah, has a friend (Dot) who has an aggressive form of lung cancer. She is awaiting now news on a possible a concern in her abdomen.

For any of you who have heard me say this before, Anthony has been known to be sick with things the same time someone else is struggling with the same stuff. I told Jimmy that his mom is going to be okay because Anthony is there for her. As I�m writing this, I�m realizing the connection with Dot�s lung cancer. Too many lung issues for one entry.

Yell these prayers for us. God will answer us with healing, especially during Holy Week.

Love
Michele

Sunday, April 2, 2006 10:04 PM CDT

While we greedily wish miracles would come to Anthony in big ways, we certainly feel blessed with his progress thus far. Yes, I have thoughts that one morning I�m going to walk into Anthony�s room and he is going to be sitting up and say �Hi, Mom.� But believe me when I tell you we see our miracles in smaller packages. There is no doubt Anthony has been on the receiving end of small miracles. And while we wait for those big miracles, we welcome the little ones. For instance, Anthony began receiving physical therapy through the school again. The miracle is who it is. Her name is Ellen and she is from Children�s Specialized Hospital. When she heard we were looking for a replacement for PT through the school, she quickly volunteered. She was already school certified which made the process go much quicker. Now, Anthony is receiving the 2 hours per week of PT from the school district AND she is giving him a third hour per week to make up for all the time that is due to him. You know how I feel about the therapists from Children�s, so trust me when I say how lucky we are to have Ellen on board. She is an added blessing to those already working with Anthony. Another prayer answered is we have a speech therapist. The bonus is she will come through our insurance plan. She used to work at Children�s, too, and she was highly recommended. She specializes in swallowing and will be an added blessing for teaching Anthony to eat again. I�m not sure when she will be starting. On the feeding note, Anthony ate for Janelle again last Thursday and, again, did amazing! This time he ate a chicken noodle dinner and took one and a half ounces!! He even had that typical stained face afterward that I was proud to show off! Anthony works so well with Janelle. It�s easy to see whom he trusts and feels comfortable with. Anthony has what I like to refer to as the dream team of therapists. Andie gets all the credit for prepping Anthony for the intensity he is now getting. He now has an average of 2 hours of therapy per day. And Ellen is coming on Saturdays, which takes some pressure off Mike, as he is the weekend therapist! I see big things for Anthony. I think he is just going to take off real soon. The next miracle, no?

On the illness front, we have restocked the cabinets with antibiotics. Matthew tested positive for strep last Monday and has ear infections. He missed 2 days of school last week. Lucky me! This weekend, his allergies were the worst I�ve ever seen for him. At least I think it�s just allergies. Anthony possibly has another sinus infection and is back on levaquin. Saturday, Laura�s left ear started to drain, so she�s back on the eardrops for an infection. Mike and I are okay so far! On Thursday, Matt and Laura get their second round of immunizations. Four for Matt, five for Laura. Yikes!! Matthew had his first t-ball game this weekend. He wanted everyone he knows to be there. He had to settle for Pop Tomaino and us!

My mom is back at Concord, the subacute rehab facility she was in just before going to the hospital for infection. I�m pretty sure Mom is thinking she�s not going to get better and will not get home. We all are trying our best to reassure her but her spirits are very low. I tried some tough love with her on Friday but my mom is a tough egg to crack. Please continue the prayers that her body continues to heal and she thinks positive thoughts.

Thanks for sticking with us, despite the lag time between entries. Continue your prayers for miracles no matter how small. We are so gracious for them and are careful to give all the praise to God.

Love
Michele

Sunday, March 19, 2006 1:56 PM CST

I figure a quick update is better than no update, so here goes.

On Thursday, March 16, Anthony ate for the first time since October 2004. His OT, Janelle, fed him stage 2 (baby jar stuff) macaroni and cheese! He ate about a quarter of an ounce! Janelle said she knew he would do well but he exceeded her expectations. Anthony was fully engaged and maintained eye contact with Janelle to tell her he wanted more. His mouth movement was very organized which is important when doing feeding trials. And he cleared everything in his mouth without difficulty! No coughing, gagging or spitting. I'm not sure how we proceed with this. We trust Janelle's experience and are letting her guide us. This is why we are looking for our own speech therapist who is experienced in feeding so that it doesn't take Janelle away from the other OT things that Anthony needs that are so important. This is truly a blessing and great progress. Anthony has also had some good therapy and school days this past week. On Wednesday, he did some sitting on a bolster with very little support at his hips. I'm so grateful for these small steps and, while my frustration looms for more progress faster, I can't help but be proud of Anthony and give praise to God.

Matthew and Laura are doing well. Matthew still has a little fluid in his right ear, but the infection is gone. Laura's ears look great. The tubes are clear and she is hearing much better, too!

Mom is still in the hospital. She has a little bit more energy but she is still bed-bound so she's stiff and hesitant to exercise. Not that she is getting much in terms of therapy in the hospital. And the quality is lacking because everything is done in the bed. Her wounds are said to be improving but they are pretty significant so I don't know how to translate that. There is some controversy over where the infection is at this point...it had been in the blood and wounds. Something that we won't be able to clarify until Monday. And there's talk about discharge but we don't want it to happen too soon. We also aren't sure which rehab facility she will go back to. There is a question about her Medicare coverage, too. Please pray that Mom heals quickly and she gets back on the road to recovery soon at a facility that will be best for her.

Another prayer request is for our friend, Norah's friend who is battling an agressive form of lung cancer.

Thank you for all you say and do to make our days brighter!

Love
Michele

Thursday, March 9, 2006 12:33 AM CST

NEW PICTURES!!!!

and...

Mom's back in the hospital! She has another infection in her blood. Not sure if it's her wounds, too. You can imagine how her spirits are now.

and...

Mike and I were invited to share our Make-a-Wish story at an upcoming event. I asked to do the speaking and Mike gracioulsy complied, as long as he gets good help at the house!!! Here are details :

�Wish Upon A Star� Dinner/Dance Benefiting
Make-A-Wish Foundation� of New Jersey
Friday, April 7, 2006
The Mill at Spring Lake Heights
7 p.m. � 11 p.m.
Dinner, DJ, Dancing, Cash Bar, Gift Baskets Sports Memorabilia Auction Courtesy Fameabilia of Red Bank
$100 per person

To purchase tickets, please contact Lisa at leemarie66@aol.com.

Monday, March 6, 2006 10:00 AM EST

I forgot to mention a couple things in yesterday's entry. So I'm adding them now!
My mom is back in a rehab facility. She is off antibiotics for the wound infections and the doctor says they look healthy. They are quite extensive and will take time to heal. Pray hard that one day, when the nurse goes in to change her dressing, she is surprised to see it all closed up. Wouldn't that be amazing?! She is in more pain than usual because she wasn't moving when she was in the hospital. But we're all familiar with that...one step forward, two steps back. She still hasn't gotten her spunk back and that bothers us all. My dad is very tired. His routine is get up, see mom, go home. His activity level is not what it usually is and I'm sure the lack of it is the cause of his fatigue. But as he says "I've got to see my wife." My mom doesn't let him say or do much for her, so he feels helpless, too. We all want to see her get home with the function she had before this, but this won't happen until she starts fighting back. She needs to go back to saying the rosary daily. This used to give her lots of strength when Anthony was struggling.

This is a message from Lisa:
Hi Everyone!
Following are details for an upcoming dinner/dance benefit for the Make-A-Wish Foundation of New Jersey. If you can join Brian & me there, please just send a check made payable to Make-A-Wish Foundation of New Jersey to me at:

1703 Randolph Way
Wall, NJ 07719

A table of us got together at the last event in October and had a fun time! This time, the food & entertainment are going to be even better! Hope you can make it...it's an organization near & dear to our Tomaino Family. Thanks for considering!

�Wish Upon A Star� Dinner/Dance Benefiting
Make-A-Wish Foundation� of New Jersey
Friday, April 7, 2006
The Mill at Spring Lake Heights
7 p.m. � 11 p.m.
Dinner, DJ, Dancing, Cash Bar, Gift Baskets Sports Memorabilia Auction Courtesy Fameabilia of Red Bank
$100 per person

Mike and I were invited to share our Make-a-Wish story. I asked to do the speaking and Mike gracioulsy complied, as long as he gets good help at the house!!!

Okay....now back to the updates!!!!

Sunday, March 5, 2006

Sorry for being MIA for so long. I think about posting something with each passing day but my body gives in to the fatigue and I can no longer stay up as late as I used to (remember the 1 or 2 AM entries I always did?!). I'm not sure how good I am going to be in remembering all the goings on since my last post, but I will at least give you all the up-to-the-minute details.

Anthony is doing well. He has, once again, overcome this sinus infection with the help of Levaquin. When this one started, I put him on daily Claritin and Singulair hoping the sinus stuff is allergy related. Now that he is done with the antibiotic, time will test my theory. He always does so much better all-around when he's not battling a sinus thing. We got some new parts for his wheelchair...new headrest (he has had a bad headrest for the past year; it wasn't the right size or position to give him good head support), new footplates for holding his feet in and a new seat. He is sitting so much better in the chair, but his body is adjusting to the changes. Whereas he was holding his upright for 20 minutes with the old headrest, he has to rebuild with this new one. Andie says it's not a setback or regression, that he has to used different muscle groups to do so. Does any of this make sense?! Last week, Janelle (OT) and I were talking about the goals she had set for Anthony. Every so many weeks, she has to re-evaluate him and set new goals. She said she would carry-over an eager goal she had set for him the he didn't achieve (but he did meet 3 out of 4 of her goals!). This goal was that Anthony would show voluntary movement of his right arm to command 50f the time. She said he got to about 30 We were talking about this in front of Anthony and apparently he was listening. For this goal, she asks Anthony to move his right arm from his side to his chest. And he did it right there in front of us! Like, "well I'll show you I can't do it!" We were both obvioulsy excited. His body was so relaxed while he did this and the only body part moving was his right arm, which shows he has control over other muscle groups. That would be great in and of itself. But when I came back later, Janelle said, "apparently, Anthony doesn't like not achieving his goals because he did it 5 more times!" Didn't I tell you he's amazing?!

Matthew had an ear re-check last Tuesday with Laura. His hearing test from earlier this month showed lots of fluid in his ear. The doctor thought his ear looked better than the hearing test looked, meaning the fluid was going away. But there was still fluid there. As my kids have the best timing, the next day, Matt came home from school not feeling well. He had a slight fever and his right ear had a flaming infection. Within an hour, he was screaming of pain. So, he's been on an antibiotic since Wednesday. Other than that, he has been great.

Laura's re-check went well. Although, she has an ear infection in her left ear. I know what you're thinking, she's got tubes, why did she get an infection. Well, she had a lot of dried blood and wax lodged in that ear ever since the tubes were put in. Drops only cleared out half of it. So, it was a breeding ground for bacteria. The good part, though, is since she has the tubes, all she needs in antibiotic drops because it can get right into the ear through the tube. She and Matthew go back in a month for repeat hearing tests and re-checks. Other than having a lot of draining from that ear, she has been great, too.

I was very sick this weekend with tonsilitis and an infected lymph node. Mike has been wonderful in taking care of the kids so that I stay away from them. Lorrie was over on Friday night, which was my worst night, and helped Mike out a lot. Matthew and Laura have been great, too. They've been so worried about me, checking on me, offering to bring me breakfast. Matt was worried most. He is a very compassionate little boy. They slept over Lisa and Brian's last night, which couldn't have happened at a better time. They are still there and having a ball with their cousins. They love being with other kids. They thrive on that. Matthew doesn't know what to do with himself when no friends are around!

When Matt and Laura went to the ear doctor, we went to CHOP's office in Voorhees. What made it special is we got to carpool with Laura's friend Brittany. While she had her oncology appointment, the kids saw Dr. Handler. And then we met back up in oncology where the kids got to see one of our favorite nurses from transplant, Casey. She's doing her clinical there to complete her nurse practitioner degree. Now, Brittany gets to see her every 2 weeks! They were looking forward to seeing her all day. Me, too! It's great to see a familiar face when it doesn't involve being in the hospital. Thanks for driving that day, Michele!

As I'm proof reading this, I'm thinking, is that all?! It seems like so much more is happening. I'm sure there is and it just blends into the next day. Anthony's progress slow but ever-present. Each new thing brings more hope and excitement. He is determined and will prevail. God is answering our prayers. And we are always mindful of His hand in Anthony's recovery. I always tell Anthony that this is his body and while I can help in other ways, only he can do this, but he should ask Jesus to help him because He wants to help and has been helping him all along. Anthony listens intently to this as well as any time we talk about what is going on with his body. He needs that reassurance that things are going to be all right. And, through my firm faith that it will, I tell him so.

Thank you for your constant thoughts and prayers. Maybe, I could ask you to be specific about some things. As always, pray for Anthony to talk. Right now, Janelle says Anthony is ready for intense speech therapy, including feeding trials. Pray for someone to come into his life that can do this (or if you know of a pediatric speech therapist with rehab experience, pass that along!). Also, Anthony's school physical therapist has decided to decrease her load which means she has dropped Anthony. And there is no replacement for her at this time. I know, how professional to quit before a replacement is found. But, I'm trying to take the high road and believe that something good will come out of this. That someone better will come along through the school district, even though there aren't many physical therapists as it is. Please pray for a excellent replacement very soon. It just isn't fair to Anthony to lose what he is so deserving and in need of. And please continue to pray for good health for all three of them, that these ear infections go away quickly and Anthony has no more sinus issues.

Thanks for your love, prayers and patience! We love you all very much and couldn't have come this far without your encouragement and words of faith. Keep them coming, no matter how bad I am at updating! Anthony, Matthew and Laura's progress is such a testament to the power of prayer, trust and belief. Thank you, Lord, for Your continued protection of these terrific children!

Love
Michele

Wednesday, March 1, 2006 6:37 AM CST

Hi all,

Just giving a quick post before work until my busy wife can give one of her requested entries. Anthony is just finishing his dose of antibiotic for his sinus infection. It is amazing how he has little to no secretions when his sinuses are clear. Because of Andie's vacation (she is back!!) and Toms River's school's winter break, Anthony did not have much therapy last week. So this week, he is adjusting to getting back to his busy schedule during the day.............Matt and Laura are doing well. They were off from school last week and had alot of play dates with friends. On Friday, they went to work with Dad and enjoyed helping make the guidance office function. Thanks to all of my friends in the office and the students who played with the kids to make their day special.

Note: for those of you who read the Asbury Park Press.........the article in today's county section about the fundraiser tonight could not have been more inaccurate. I did not think with some of the previous articles that the facts could not be more distorted. But with this one being as short as was,it was pretty bad.

I will try to get Michele to write a more detailed message later in the week.

Continued prayers for all who are in need.

Mike

Monday, February 13, 2006 10:39 PM CST

The more time that passes since the last entry, the more guilt I have that I haven't posted one, the more guilt I have that too much time has passed to say anything...Oh the Catholic guilt! Anyway, I'm here now!

So, what's new? Anthony has yet another sinus infection. It took us 6 days before finally giving in to the need for Levaquin again. My plan is that when this is gone, we are going to treat Anthony like he has allergies. Mind you, he never had them before, but he seems to be showing the same pattern Matt did as a toddler...blocked sinuses leads to ear infection; if wasn't until we finally figured out he had allergies, gave him Zyrtec and he's been fine for the most part since. So, I hoping that's the case with Anthony. We already have him on allergy stuff as we battle this last sinus infection so hopefully we will be one up on it when it's all said and done. He's on his 4th day of Levaquin and seems a LITTLE better, so I hope this bangs it out of him soon. It really affects his tone but not his determination. His eye gaze is improving nicely. When shown 2 to three cards, he will look at the correct card more than 80% of the time. We (his teacher and I) have moved off picture recognition and have moved on to word cards. He's doing awesome. He's reading! "Anthony, look at the word cold" and he does! "Anthony, look at the word that is a color" and he looks at the word red! His response time is improving, too! We are very proud of him. Anthony has been doing some balance stuff, too. Last week, one of his occupational therapists had him straddling a bolster (picture a log), sitting by himself...basically, he can't right now; his shoulders slump him over and his heads drops down but he was able to stay in the middle...when his body started to lean to the left, he pulled himself back to the middle! He did this 2 more times before getting tired. He also did it with Andie last Friday! More things to be grateful for. Andie is on vacation for 2 weeks -- YIKES! Can you believe she didn't approve it with us!! We will definitely miss her, and Mike is determined that Anthony doesn't lose any ground while she is gone. Mike is the next best replacement if you ask me! He does a great job with Anthony's exercises. We're a good balance for each other and Anthony -- a phys ed teacher and a nurse...what more could he need!! I say that tongue in cheek, of course!

Last week was our monthly clinic visit which has now progressed to every 2 months!! We don't have to go back until April!! I can hardly believe it! Matthew is SOOOO happy because Tuesday is his gym day and he has been getting really mad that he has to miss gym! He says tomorrow is a special day for him because his class has a book fair, it's his Valentine's Day party in class, and he has gym! To which he yelled, "In your face, Philly!"

So, the clinic visit was very busy. We try to multitask when we go so we had several appointments that day. One was for Matthew and Laura to see Dr. Tyler, the neurologist. He showed me Matthew's MRI. Now, I know very little about MRIs...I know the basic shapes to look for and I know what color things are supposed to be, so, pretty much I know nothing. But looking at Matt's MRI compared to his last one, the difference was very obvious. Maybe too obvious I thought. But, the confirmation from the top neuroradiologist is this is an improved MRI, no question. One for the books, so to speak. I know of Emma McGregor's and Max Trimper's MRIs showing improvement. But nothing is published about this sort of thing yet.

One other stop besides transplant clinic was a hearing test for Matthew, which he failed with flying colors. His hearing is fine, meaning he doesn't have nerve damage. He just has a ton of fluid in his middle ear making it very difficult for him to hear. He and Laura are due to see the ENT the end of this month so we'll see then what's going on. He did have a little cold and cough but nothing giving him a fever or pain. Usually he has pain with an ear infection, but nothing so far. Hopefully, it will all clear by then.

Laura is up to 33 pounds!! Record breaking for her. Her appetite has been good and her energy level has been up since she has been on medication for her inactive thyroid gland. We are still adjusting the dose. Haven't find the right one to get her levels where they should be but this is very typical in the beginning. Laura has been really good about swallowing the pill. Plus, it helps that the pills are so tiny!

My mom is back in Brick Hospital...her pressure sores have gotten infected. She's on IV antibiotics. She's not happy but we're glad she's getting the treatment she needs to knock out this infection. Please pray for her spirit. Mom is very depressed. She has no appetite and hardly eats. Too many setbacks for her. I want to see that spunk in her again. I've already threatened her that I won't bring the kids to see her...I meant that in a funny way but I know how her grandchildren are huge motivators for her. Not much is working so I'm counting on the power of our prayer warriors to surround her with all the angels she needs to get better.

Our love and prayers continue to go our to our extended families... the Neuss', Wymans, Knights, Erica, and the Fox family. Too many to pray for but it is comforting to be close to Jesus in prayer.

Mike and I keep having this discussion recently about God's healing, prayer, illness, death and how to interpret all these things in relation to His word and what we know and believe. We haven't been able to come up with anything that makes sense or explains anything. I guess that's the wonder of Him. The intrigue that brings us closer and keeps us there or pushes us away but brings us back. I go through everyday without worry. I expect things to keep getting better. I don't doubt that. I can't. Is that a healthy trust or warped euphoria. I don't think either. I think it is just a culmination of the wonderful things I have learned about prayer and trust from you loving, faithful followers. I learn from and thrive on the spirit and grace you relay to us in your words. Lately, I've been singing an old Youth Ministry song that I think I mentioned before...
"Yahweh is the God of my salvation. I trust in Him and have no fear. I sing of the joy which His love gives to me and I draw deeply from the springs of His great kindness."
I'm tired everyday (one of the reasons I've gotten so bad at updating). Tired physically, sometimes emotionally, definitely mentally! I feel torn at all ends trying to give as much as I can to each child with very little left for Mike. But God has been good to us. What I have that gets me through is trust. At the end of the day, that's enough for me.

Love
Michele

Wednesday, February 1, 2006 7:13 AM CST

Friday, February 3

I can't believe I have to do this, but I am adding ANOTHER prayer request. This one is for Carolyn Wyman's daughter, Susan. She is a beautiful 22 year old mom of 2 who was just diagnosed with 5 brain tumors. Please raise her up in prayer before she receives surgery that could leave her unable to walk and talk. The good Lord won't let that happen once He hears from us.

My question is when will satan realize he can't beat us down? We will not let him prevail; he has no power over us. The Lord is our rock and salvation...we will forever trust in him.

Love
Michele

Wednesday, February 1
Hi all,

All things are going well in the Tomaino home as we hurry through this mild winter...................PRAYER ALERT:We write and reach out today for two of our prayer warriors children. Trish Knight's(our top MLD destroyer) daughter Braeden, is in the PICU in a Texas hospital with a rare illness that makes the body reject nutrients. Another one of our prayer warriors,Gary Shinn's (who is in a Men's Christian Group with our friend Lloyd Taylor) daughter Erica has been diagnosed with an early stage of Parkinson's Disease. Michele and I ask that along with our children, you put Erica and Braedon at the top of your prayer list. Now is the time to sent a massive amount of prayers to the heavens and light up the sky with the hope and faith that God will guide and protect these families as they begin their journey of healing.We will try to keep you updated as much as possible over the next few weeks.

Scripture: Jesus, if you are willing, you can make ___________ clean. Then Jesus put out his hand and said I am willing, be cleansed.

Scripture: To receive what you ask in prayer, one must already believe it has been given, and it will be granted .

Please pray.

Mike

Thursday, January 19, 2006 9:26 PM CST

Whenever I think about updating this site, I�m at a loss for what to write about. I don�t want to bore you with the same old same old�Anthony�s working hard, everyone is healthy, there isn�t enough time in the day to get things done, yatta, yatta, yatta. Of course, there is an occasional good day to talk about but fatigue sets in and we don�t seem to get on the site. I take so much comfort from your messages in the guest book and I don�t want to lose that. So, here I am, updating to keep your interest and keep encouraging you to send us a �hello.� It means a great deal to us how many of you continue to keep us in your daily thoughts. It also helps that I have a lot to talk about.

I say a lot how hard Anthony is working. I can�t stress enough how proud of him I am. He is truly amazing. This week has been an extraordinary week for him. When Anthony is in his wheelchair, he is at a slight tilt because when upright, he can�t hold his head back against the head rest for too long�like for only a couple minutes. Not to mention that his headrest is terrible and we are in the process of ordering a new one that will fit him better. With that in mind, on Saturday night, Anthony sat upright in his chair for 10 minutes! Not just that, but he was turning his head back and forth looking at our faces and a book Lorrie brought. Ordinarily, turning his head would make is head drop. But he did so great. Lately, Anthony has been favoring his head to the left, we think because of a stiff muscle. Actively turning it to the right takes effort and is uncomfortable. Sunday morning, we had Anthony looking out the window to see the overnight snowfall. I told him I couldn�t look anymore because it was so bright, it was hurting my eyes. As soon as I turned away, I watched Anthony effortlessly turn his head away from the window, too�from the far left all the way to his far right. Since then, he has been doing much better at keeping his head in the middle and turning it in both directions. To leave it at that would be impressive, but no, there�s more! Anthony sat upright in his chair for 20 minutes for Andie on Thursday. AND, he turned his head back and forth a couple times! I could stop there and all would be thrilled but I truly have saved the best for last. Thursday night, Anthony spoke. He said �yea� three times to us asking him if he wanted to get out of his wheelchair. The five of us were in the kitchen just about to sit down to dinner. The first time he said it Mike and I looked at each other�we knew he said something but we weren�t totally sure. I asked the same question again and we heard it again. This time we were pretty sure of what we heard. Mike quickly lowered the radio we had on and we asked again. Third time�s the charm. Same �yea.� Even Mathew and Laura knew. Tears of joy flowed freely. So, in light of this progress, we are asking you all to step up the prayers. Prayers for continued progress. Prayers of thanks for bringing Andie and Janelle into our life. Prayers that the Lord sends us a speech therapist who will help Anthony�s speech take off. Prayers of strength for Anthony�this is hard work for him.

Matthew and Laura are doing well. They seem to be starved for our attention, though. Especially Laura. They know how to get on our last nerve. I try to remind myself that they are victims of circumstance and not to be angry with them, but frustration and fatigue make it easier to yell than to be understanding. For Laura, it seems like I am always with Anthony, when I feel like I never am. For Laura, she is always feeling slighted. I guess she has a right. Matthew is struggling to keep up the first grade pace after not being in school last year. We try to work with him as much as we can but there never seems to be enough time to do extra things. Everyone needs something. We�re all trying to catch up on the year we lost. It�s difficult when you�re outnumbered with three healthy children, but add a child that needs extra care and some days seem impossible. I think we�re doing a good job, though. I certainly wish there was more time in a day (don�t we all, you�re saying, but you can�t imagine how much more time we could use!!). And it�s a good thing that dust doesn�t make you sick!! But, we�re muddling through. And the highs of this past week certainly make it easier to get through to the next day.

My mom is being transferred to another rehab facility. We�re hoping a fresh start will bring her more motivation and strength. She continues to move her right arm and leg but the progress is not fast enough for my mom. No doubt where I got my impatience from. Hopefully, the news of Anthony�s progress will encourage her to keep working hard. Prayers help, too!

In our lack of journal entries, we forgot to mention some significant milestones. December 29th and 30th marked Matthew and Laura�s 1 year transplant anniversary. We have a make-shift celebration for their �re-birthdays��a candle in a cupcake I think! And Matthew turned 7 on January 3rd. We had a surprise party for him last weekend with his cousins and close friends. He was extremely surprised�.we got him good!

I�m praying we have more good news to report in the near future. It would certainly get me back into writing entries more often!!! We have been saying for a long time that you have to believe. It is truly faith that has gotten us this far. Not once will I ever lose sight that we are where we are because of God and His ever-present healing. He IS TRULY awesome, willing and able. And we will not stop in asking, seeking and knocking for complete healing. Thank you, Lord, for all Your amazing works.

Love
Michele

Tuesday, January 10, 2006 9:22 PM CST

Let me start by saying the kids are doing well. We are over our colds for the most part. Anthony was the last one to get it and he�s on the tail end. Hopefully, it won�t come around again! Matthew and Laura are back in school. Anthony is working hard in therapy; he�s using a switch that when he presses it, it turns on one of his toy�he has to release the switch to turn it off. He�s doing this on command! He�s doing really well. Carla, his schoolteacher, is working really hard with Anthony on this. We are so proud of him. He is also doing well with rolling over. I�m trying to capture the sequence on camera in a way it would translate on the web site. I�m hoping to get that on soon.

Well, I�ve dragged it on long enough. I�m bursting to tell you some good news about Matthew and Laura. We went to Philly today for MRIs for them. We came home to great news. There is NO CHANGE on their MRIs!!! If you remember, some of Matthew�s white matter is affected on the MRI but he is NOT symptomatic of MLD. The better news is that Mathew�s MRI actually looks like it is a little better than the last one!!!!!!!! Not only have we stopped MLD, we kicked it in the proverbial butt!!!! Truly a miracle!! We are so blessed, elated, delighted. I�m not sure there are words. The next MRI six months from now will be very interesting.

On another note, Anthony had a CT scan of his sinuses today. They look better. YAY! The ENT was worried it wouldn�t get better and may have needed surgery. There is just some inflammation in there that may be allergy related. So, he will stay on Nasonex to clear that up. And Laura had her re-check of her ears. There was lots of dried blood in the ears, so we need to try new drops and some peroxide to get it out. She hasn�t complained about her ears since the tubes were put in. Hopefully, we can get that cleared out soon.

My mom is doing well. She is getting movement in her right hand, arm and leg. Her leg started coming back first. Her hand and arm are still very weak and floppy, but we�re praying for it all to come back soon for her. Her speech is much better, too. Less slurring. She remembers everybody and knows all the family goings on. She was so happy to hear the news about the kids tonight. I�m so happy to deliver it!

I can�t help but beam as I type this entry. The Lord is so good and giving. We are truly giving Him all the praise and thanks tonight. Good news all around for all the Tomainos and Mauros!

Thanks you, God, for showing us Your mighty ways and listening to our many prayers!!

Love
Michele

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