..................Boston Appointment & nephrologist

The past few weeks have been awful busy with Dr appointments and the Christmas holiday, so please bare with me as this post is late. Zach had an appointment with the nephrologist on 12/16 and at that appointment he said he doesn't feel he would be a candidate for the Bisphosphonate
Therapy. I am kinda happy about that, because that would mean Zach would have to get a pic line or port for the therapy which would just be even more stress on his self image. The Dr did say his Right Kidney is the size of a 1 yr old, while the Left is quite larger and compensating for the Left. His BP was quite high 146/80 something. We are now monitoring his BP 2x a day to see if it was just anxiety or really that high which could mean more detailed kidney issue. I have bene doing the BP readings and I am getting anywhere between 124-140.

On 12/17 we had an appointment with Dr. Spencer in Boston. She said he will need surgery again because the rod is retracting in the femur and its near the growth plate. He still wasn't healed from his injury in August, but was having some skin break down and a blister on his heal so she took him out of the cast and placed him a brace that you can set a dial for the amount he can bend the knee. Its kinda hard to keep it in place because it just keeps falling down no matter how tight we put the straps. She recommended we try to schedule his surgery around a school break so we are waiting to hear of a date in February since there is winter break then. I know not a way to spend your school vacation, but he keeps missing school for all these appointments so we need to plan accordingly. Dr. Spencer said he would probably be in the hospital 5-7 days again and have a body cast on again. So very similar to his last surgery, except this time just the femur not femur & tibia. While she is in there she will do a bone graft again too.

Then we had Christmas the next week and all the festivities that go along with the wonderful holiday and on Monday 12/27 we went to the peditrician for a follow up on a evaluation from school regarding add/adhd. Dr. Anwer was very patient and sat and actually talked to us about all of this. He agreed with me, this is nothing new with him, but thought maybe he would out grow it or thought some of it was just built up "stuff" from him being so limited and going through so much. Its now affecting his school work so time to be active. No more sitting back and watching and trying to use conservative methods for him. Dr. Anwer prescribed a med for him and its only been 2 days since starting it. It is a slower acting med so it will take 2-3 weeks to get to therapeutic level. I feel awful as a mom having to do this, but we all were getting frustrated at this point and its best for all of us. I will tell you if it makes him a total different child (sedated and what not type) I will stop it immediately because thats not what we are looking to do. We just want to take the edge off for him.

I will keep everyone posted as to when the surgery will actually be. Thanks for all the well wishes we have already received. They help more than you can imagine.

................Holidays in full swing

I love this time of year just for the baking. Ok I will admit I like Christmas, but I like the original meaning of it not this going crazy and grumpy people in the stores.

We have spent the last couple of weekends baking all sorts of cookies, and doing some shopping on a leisurely stroll. It has been very enjoyable I must say. Usually I run in get what i want and get the heck out of there and get agitated while doing it.

On top of getting ready for the holidays I have been busy running the kids to Dr. appointments again. Its that time already. Wow 4-6 months goes by fast. Marissa is having some problems with her knee she had surgery on so she went last week and they ordered a MRI immediately. Well we go back this week for the results. They did say nothing loose, but her knee cap is a concern. I sure hope she doesn't need surgery again.

Zach had a US of his kidney last week and we go to the nephrologist this week. If I am reading it correctly his left kidney is almost double the size of his right kidney. We will know more on Thursday when we go to the Dr. Then on Friday we are off to Boston again to see Dr. Spencer. Hopefully the cast will be off for good for Zachary. If it comes off it will be 4 months in a cast for the little guy, if not then it will be longer and who knows how much longer.

I am hoping his US machine is helping now that we have had it for about a month. It does take time especially seeing it has to go through a cast so we shall see.

Other than that, thats it on this end. Hope you are all enjoying the holiday season and be safe and Merry.

.................Ultra sound therapy

Ok so yes I am that mom that follows the news and then asks the Dr about what was on it. Well it just happened to be the week before Zachs last appointment I caught part of a story on the news about ultrasound therapy and how it helps the bones heal faster, so you know me I go in the Dr office and ask about this. Well the dr said yes its helping people, but it may not be a good thing for Zach. I was like what? Why? This isn't fair! Well after explaining to me that what it does is kinda fuses the bone together and stimulates bone healing and new bone growth if a bone graft was done. So with that in mind thats a great thing because thats what we want right? Well yes and no because Zach is only 7 and hasn't hit his growth spurt yet for his teen years they are worried about it affecting his growth plate. But on the other hand his Dr said he already has a leg that is shorter than the other by more than 1 1/2 inches (almost 2 now) so that shows his leg isn't really growing with the other leg, so trying ultrasound therapy would be worth a shot. We can't really stunt the growth plate anymore than it already is so we are going to give it a shot. I am hoping and praying this might help him some and maybe make the bone stronger since he already had the bone graft done almost 2 years ago.

So with all that said today his ultrasound machine thing-a-ma-gig will be delivered. I was shocked when I heard the cost of the darn thing. Sit down (who am I kidding you probably are since your reading this on the computer) $5,000.00. I am in the wrong market I need to invent 1 of these darn things. Thank god for insurance (and I guess my insurance isn't all to bad now that we switched) because they participate with BCBS so they can only charge $3,000.00 and our policy covers 50% so that brings it to $1,500.00 for us to come up with. I was like oh I don't know if we can swing it then especially seeing its more experimental at this point for him. If it was a definite it would help him and he absolutely needs it then I wouldn't hesitate on struggling even more to pay for it. But god was looking over me at this moment of time. The lady on the other end asked if monthly payments would help and I was like not really we have a ton of medical bills right now and I can't swing anymore, so she said they do have a program she can see if he would qualify for and if so it would pick up the cost for us. She was really helpful and guess what??????? We qualified (with her help)!!!!!!!!!!!!! I was so thankful to her I was literally in tears on the phone. I can't believe someone out there was willing to help us out for once instead of making us try to jump all the hoops to get through. So thank you to her and God for looking over us today. I can't wait to see this and if it really works for my little guy.

I will post pics later as to what it looks like and how it actually works once the guy delivers it and applies it.

...................Another Cast

So today I take Zach back to the ortho for a check up on his leg and hoping he gets the cast off for good, but to only be hit hard again with bad news. Zachs leg is not healing this time around so back on with a cast. Another 4 weeks and this one is even longer. This goes literally from his hip to his toes and strict non-weight bearing. Thats going to be the tough part, but we are going to really work on it.

I got to really sit and chat with the dr about this problem and I suggested to her ultrasound therapy. She told me the pros and cons about it but said it might be worth a shot with Zach. So we are waiting to hear from the ins. company if they will cover it. I am at the point where I will try anything for my son to be able to run around again and be "normal". This time he picked out a bright orange cast so he can cheer for SU. He is to funny and takes it all in without really phasing him much. The other option we talked about was bisfonsonate therapy (I know that is spelled wrong sorry). So we are waiting for our referral appointment to a nephrologist to discuss this option and to see if Zach is even a candidate for this therapy. I really need to read up on this the next couple of days so I know what i am going into when we go to the appointment.

Other than that, Marissa is healing well. She is putting weight on her leg (even though she isn't suppose to yet) and getting very impatient with the crutches. She goes back in 2 weeks for her appointment and hopefully she can start to bear weight and get moving again. My poor kiddos they are just a train wreck. But with all the love they have and get we know they are just fine.

................Wordless Wednesday

...............Getting better

Last week was a busy week here again with Dr. appointments for the kids. Zach went on Wednesday had xrays and 1 fracture is healing while the other has started but not enough to keep him out of a cast. So back into a leg cast Mr. Zachary went. He wasn't a happy camper, but he doesn't listen and stay down to rest it. I know its hard especially when he is a 7 yr old boy, but boy I sure would like to be without a cast on him for a little while. I sound like a broken record telling him to go lay down or sit in the living room and watch tv and rest your leg. I will say I have threatened him a couple times and it doesn't bother him 1 bit. That child is going to be the death of me I swear.

Marissa went on Friday and they were pleased with her progress. Very happy with her movement & flexing she can do with it. Michelle told her she has to use the crutches and immobolizer still for another 4 weeks. That didn't go over well because its homecoming weekend and she didn't want to be strapped down. Well it was a rainy, cold, and windy day so the foot ball game was out already and I told her she could go to the dance regardless. We let her have her brace off for homecoming pictures but as soon as they were over it went back on. I think she has been cheating and trying to walk without crutches and her brace because she has had a lot of pain the last couple of days and she was warned too, she needs to stay off it or she will be having another surgery. What is it with my hard headed kiddos and not listening to the Dr?

............No luck what so ever

We went to the doctors today for Marissa with a check up on her knee. She will need surgery and its scheduled for 9/30. They sure aren't wasting any time. She has a chip on the knee bone and it needs to be removed or pinned back in place. Dr isn't sure if he can replace it because there is already fluid behind it and that means its already killing the bone in that area. If he can't pin it, then she might have to have another surgery to fill that area in because its on a weight bearing part of the knee and she will need something there. The first surgery isn't to bad they go in with the scope and 2 little needle holes but if she needs a second then we are looking at a longer surgery and recovery time. He said of atleast 4 months up to a year. So needless to say we have a very unahppy little/big girl on our hands. Dance is at a stand still for her right now. Please say some prayers that everything works out for her.

................Wordless Wednesday

..................Family Update

I know its suppose to be wordless Wednesday, but I have been slacking at updating and have the time now to do so. Zach is in a cast again. He was in a bouncy house and a older kid (around 15 what where they thinking with little kids in there too?) was doing back flips and landed on his leg and he has a fracture of the femur. He is casted until the 22nd of Sept when he goes back for a check up.

Marissa is going to PT for her knee because she has a chip on the knee cap. If PT doesn't work we might be looking at surgery for her. So all this makes time very slim and crazy around here so please forgive me for not updating often. Marissa is off to the Justin Beiber concert tonite at the NYS Fair and she can't wait. Its like almost 1 of the hottest days of the summer to go also. So glad Monday is looking like around 73 for me to go. LOL

If anything changes I will be sure to update you all here.

...............Finally it fell out

Yesterday Zach came home from his trip to New York to see the Yankees play and his tooth looked really loose. Now he has had this stinking thing loose for probably a good 2 months I kid you not and complaining it hurts. Well we all know let it fall out on its own so you don't cause any damage. Well he sat on the couch next to me and kept wiggling it. I was totally grossed out since I don't like teeth for some reason. Well his sister came out and he asked her to help him pull his tooth. It was just a hanging so she worked at it, and can you believe it took them probably a good 5 min. or more to get the stinking thing out. Well he has officially lost his first tooth on his own. He has had 2 pulled, but thats because they were abscessed and no where ready to come out. So it was a big night for the little guy to put his tooth under his pillow and hope the tooth fairy would come. Well she did while he was at the baseball game so when he got home he was surprised already. He couldn't believe it. (I figured it was easier to do then, rather than wait and forget. Which would be terrible.) I will take a picture this weekend and post the beginning of next week.

Boy these kids make out like bandits now-a-days.

..............................Wordless Wednesday

....................Boston Update

Friday we went back to Boston for a follow up visit with Genetics & Orthopedics for Zachary. Genetics was first and was just a update appointment and they needed to go over a couple things that weren't clear for the research. Zachary was put on the panel for the Oculo-Ectodermal Syndrome case and is the 16th person with this syndrome. We will hear more back and learn more about it as time goes on since we agreed to have him in the study. So when we learn more we will keep you all posted.

Ortho appointment was a little more detailed. Dr. Spencer was pleased with Zachary, but on the other hand not really his development. She said he can just do the therapy at school since the other isn't really doing him any good. He has poor muscle tone in the leg and she isn't sure if it will ever be good again. We have to limit him with his activities, but yet let him be a boy. (Yeah right thats hard) We were also told we are looking at atleast 2 more surgeries and 1 being in the next year. His rod in the tibia has moved and is right across the growth plate and she is worried about that since there is a weak area in that spot too. She said we will discuss this more in December when we go back again. The other surgery won't be till his tween years because they will have to stop the growth plate in his right leg (his regular leg) so his left leg can possibly catch up.

He measured in at 48 lbs and only about 46 inches tall. He is small for his age group according to the growth charts.

Other than that, there is nothing else going on. Kids leave Saturday for camp with their nonnie and Marissa has a graphic design camp this week.

..................Wordless Wednesday

..............................Wordless Wednesday

............Its been forever

Sorry about slacking on here lately, but I have been preparing for finals in school, and focusing on keeping a really good average for this semester. My goal is a 90 but right now I have a 88. I have a test today which might put me back up there to atleast a 89. I have never had such a good average so I am excited that I am even close.

Nothing new with Zachary going on these days.

Marissa finished up softball for school, now started summer softball, and had her dance recital. Last night was her 8th grade graduation. Where has the time gone? I so remember the days of middle school. High school next year, oh dear God please help us through these trying days ahead of teen attitude, harder school work, and drama that comes with these children.

We are settling in more and more into the house. Will take time to get everything our way, but we are getting there. I am going to be having Fridays off in July/August so I am looking forward to getting something extra done. I will keep you all posted and share pics along the way.

....................He's 7 already

Holy moly. My baby boy turned 7 years old on Sunday. I honestly don't know where the time has gone. It seems just like yesterday. We had a busy weekend full of birthday activities for Zachary. Friday night he had his friends birthday party at Cedar House bowling and it was a good time by all. The kids where perfect little angels. Never thought I would say that about a bunch of 7 yr olds, but it was a true pleasure to spend the evening with them all.


Sunday, we celebrated Mothers Day, Zachary's birthday, Nonnie Judi's birthday, & Great Uncle Ronnie's birthday. Everyone came over for a cook out then we had cake and presents. By the end of the night Zachary was all worn out and took a nice warm shower and had his medicine since his leg was bothering him and off to dreamland he went. He woke on up Monday morning and was ready to go with all his new clothes and presents. He was finally able to see what he had and take it all in. Some of his favorite gifts where: Moon Sand, NY Yankees switchplate cover, his new tshirts, and his Zhu, Zhu pet.

.................Closing Date

We are so excited. We got the closing date for our new house. We will be closing on Oak St. sale at noon on 4/23 and will be closing on the new house on Anderson Circle at 2pm. We will have a jam packed weekend moving and getting everything out of this house. So if many of you don't see or hear from me for a little while (couple of weeks) don't worry, I am just buried up to my knees.

Once we get in I will post pictures of our progress with painting, settling in, and so on. Everyone please keep us in your prayers & thoughts for good weather that weekend and we get this done smoothly.

...................Hello April

Can you believe its already April? I can't. Time is flying by and I don't like it. I don't like it for many reasons. #1 reason because my babies are growing up. Next month (May) Zachary will be 7 and in July Marissa will be 14. It just does not seem possible.

Tomorrow Rob and I will celebrate our 15th wedding anniversary. Another topic that has flown by. I am very thankful for him and his family. Who would of thought we would last this long? Well deep down I did, but with the way things are this day in age anything is possible of happening.

Other than those simple thoughts nothing to important going on these days. We are in limbo still for the new house closing. Its tentative to happen on 4/23 which is 3 weeks away. I can't wait, and get the butterflies every time I think about it. Nothing better than having more space and everyone being happy.

.....................Busy Times

Are you loving this weather? We sure are and just in time. Busy times are ahead of us as we move forward in our lives. We finally got the final commitment from the buyers bank for our house we sold. So now its move forward in time really fast. Alot of packing, planning, and painting ahead of us. In the end it will be all worth it and beautiful. I will keep everyone updated with pictures of the progress.

This week we head back to Boston for an appointment for Zachary. Hopefully his leg is healing and we can begin therapy and/or putting weight on it. I have noticed he is trying to put weight on the toes, but not flat footed yet. Zachary has had a growing spurt also. Alot of his jeans are getting short on him. Finally, he is growing and just in time for short season. I hate when you have to buy jeans for a month then the next year they don't fit. LOL

Marissa is still dancing and preparing for their production of Annie at school. Thats in a couple weeks, but we have now begun the rehearsals every night and even on Saturday afternoons. She loves it so we can't complain. She had her first meeting for softball, and try outs are next week.
She also got to go to the high school for a tour with the 8th grade class and just to hear her reactions are so funny. I guess I don't remember ever doing the tour and don't remember if I was the same way or not. She informed us she needs a GPS to get around the place. We just laughed. Once she gets there she won't be so confused as to where to go in there. I just can't believe high school next year. Oh god help us through this time frame please.

....................It's Official

Our house is SOLD and we have been accepted on a offer for the house we want. Now just to sit and wait, sit and wait. Today is the house inspection on our current home for the buyer and tommorrow is the house inspection on the house we are buying. Lets pray that all goes well with both and no major problems. If everything goes smoothly we should be closing on or about 4/23.





The kitchen. It's so big with a dining room too.

The back yard has a inground pool we could do without, but it came with it.
Part of the finished basement.

.......................Cast Off

Took Zachary to the dr. today and he was able to get his cast taken off. His femur still has a small fracture in it, but the dr. didn't want his leg to lock if it was in the cast much longer, which would then mean PT again. But with the issues we are having with our insurance company I really don't want to have to deal with PT right now. So his instructions are to use the wheelchair for school still, the walker when he does anything else is fine. He is NOT to put any weight on his Left leg and if he does on goes the brace. As of right now our next follow up appointment is in Boston on 3/26.

Other than everything else in the family is going good. We have a offer on our house, and keep trying to put an offer in on a house we are interested in. We are battling against another buyer, the only thing that we might be able to over come is they have to sell their house, where ours is sold. So we should know by the end of the week if they will accept our offer over the other buyer. We are praying that they will since we really LOVE this house. A few changes will be made on our end for the dream to become true, but they will be positive changes. Change is good just remember that. LOL

..............................Wordless Wednesday

.....................Report cards

This past week both kids got their report cards. We were very proud of Marissa & Zachary with what they got for grades. Marissa made high honor roll again with a 93.80 average. Way to go Marissa. Keep up the good work and you will get far in life. Zachary got mostly 3's (out of 4) except for his reading, but that he gets help on, so he is doing well in that area considering.

This upcoming weekend Marissa is a small play with the Auburn Players. Its a non-speaking roll that just kinda happened last week. She was going to rehearsals to help out with people missing practices and acting in their place so it didn't throw the others off and just happened to get a extra part. She is also working on Annie at West Middle for the school play. She is very busy every night with something.

We are hoping to have a really nice relaxing weekend. I think we all need it. I have had a migraine for 2 days now and some R&R will do me good.

..................Wordless Wednesday

........................Dr. Appointment

Today Zachary had a follow up appointment regarding his leg, and things are looking good. Dr was very please with it starting to heal already. We thought for sure it was going to take awhile like before, but not this time. We did have his cast changed because the other one was a little low. So this time Zach picked out a bright orange. He didn't like the feeling of the other cast coming off though. He said he was scared, but I am ok with that. At least I know he won't get out of the cast and go running and hurt himself again.

Other than that nothing really new and exciting. I am busy working, going to school and still hoping to sell this house. Keep us in your prayers that we sell pretty soon before we lose out on the house we want.

...............................Broken

Zacharys Dr. finally got the cd of his last xrays from August in Boston and compared them and said his left femur is broken. I had to take him back to Syracuse to get it casted Friday afternoon. He chose a navy blue color and it goes from thigh to his ankle. He is getting around pretty good with it. He uses his walker as crutches around the house but when we go out in public he is in a wheelchair. We don't need him slipping and doing something more to it or his other leg. We go back in 2 weeks for a check up so until then its laying low for us. I will keep you all posted on the progress.

...............................Possible Fracture

Hello everyone. Sorry its been awhile but nothing to really update on, well until yesterday.

Zachary was walking out of school and tripped on his shoe lace and fell and landed on his LEFT knee with his leg bent underneath him. He came home crying and the bus aid actually carried him in the house so he didn't walk on it. For Zach to cry is a seldom occurance, and then to cry in front of people, you know something is wrong. Well we iced it, elevated it, and gave him tylonal/motrin because he absolutely refused to go have it checked out. It took us over 2 hours to get him to stop crying and calm down. I told him, I would make a deal with him. I would wait till morning and see how it is and decide then if he needs it checked out. He was fine with that and calmed down. He slept very well with no complaints, but when he woke up at 5:30 am he couldn't move the leg. I checked on him and he couldn't move it, bend it, or put any weight on it. Instantly I knew something was wrong so I told him I was calling the Dr. at 9. I would prefer him to see her instead of the ER dr's that don't know what he went through surgery wise. Well I took him over to Syracuse this afternoon and they examined and took xrays and they think he has a possible fracture of the LEFT Femur. They can't verify it until they get copies of the xrays from his Dr in Boston. So for now Zachary is non-weight bearing, in a immobolizer, and wheel chair for getting around. Hopefully we will know more in the next couple of days. If it is fractured he will be put in a cast, they just didn't want to cast it incase its not fractured then have to take it off and the cost is crazy since during this we found out Robs new insurance doesn't cover his dr. I about went through the roof because the paper we got said the doctor was a participating Dr. So now we have a outrageous medical bill since the whole thing has to be paid out of pocket. But I wouldn't refuse that bill since my son needed to be seen. Some day we will get some luck on our side. So for now Zach is relaxing in the recliner and let me tell you, he looks like a King sitting there barking out get this for me, oh I need this, Can you do this for me? Got to love our little monsters.