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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 ½ 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