I'm home

I am glad that I went, it was well worth it. I met alot of great people, some from one of the websites I frequent and many new friends. It was such a relaxing and friendly environment to be part of. For the first time in a long time, I felt like I belonged somewhere. Since having the boys it can be really difficult to feel normal around parents of normal kids. No offense to those parents but you just feel like you don't quite fit in anywhere. But being around all of these people who share the same horrendous disease was comforting.

I was so amazed by all the different stories. You had many adults affected, parents of one or more kids affected, grandparents, nurses, and caregivers and parents who lost children to this disease. I flocked to the parents who had kids with similar severity as the boys. This disease presents in SO many different ways. You have some kids that were completely healthy until they got a fever or seizures or some incident that then progressed the child to lose all of their skills. Some were able to be brought back but medications and others not. You have parents affected as well as their kids which make it extremely difficult for them to care for themselves and children. I connected with a few moms that lost children and I was drawn to them. I think I was looking for validation that I will be able to get out of bed the day it happens to me. The sad thing is many of our children will die from this illness but you can never predict when or how.
Still so little is known about mito but it was great to see so my drs. and researcher so passionate about learning more to help people affected with it.

This may sound depressing but it was far from it. I had a great time and managed to be the star of the evening. Now you all know I am not bashful. So of course I volunteered to be hypnotized.
Need I say more. LOL. Many people thought I was hired to play a role. Yes, I did this in front of 500 people. I promise I was somewhat restraint. Just a great time.

A few things I did learn which is kinda upsetting. But many drs. confirmed that it was not possible for the boys to have PDH (which is a type of mito) based on their skin fibroblasts. We know they have mito but no idea of which time. Many things have been ruled out but nothing found. So this means that we are much further from finding a mutation than I thought. I have to make a decision and get my act together for picking a dr. that I feel will really help dig for the truth. This would require me to get ALL of the boys medical records together and some labs on me, rick and Janessa. I also talked to a wonderful neurologist (I wish he was closer to me) but he talked alot of neurological involuntary movements which Avery has tons of that are not seizures, he said it is dystonia which we knew but that it can be very painful and that he would treat it. They actually use meds for MS patients, so I will email my mito dr. about that.

A few other notes, after a long, great weekend, I started off the morning at 4:30am forgetting my cellphone in Indy (luckily Nena was still there and will mail it to me). Then my flight was cancelled so I had to get redirected to Boston, however my car was in New Hampshire. Rick had to pick me up in boston and he had something booked all day, then I had to drive to NH to get my car. So needless to say, I am EXHAUSTED. But all well worth it.

Can I just say, the Canadian ladies ROCKED the house. See you ladies soon which includes you too Debbie.


The sad th

I am off

TO the UMDF conference, it is currently 4:30 am and here I am typing away. I am pretty excited at this point. I am meeting a friend from my online group. She has two boys and her younger is just a few months older than Avery, he also has mito. She is a speech therapist which is neat for me being an audiologist. You know I will end up knowing everyone by the time I leave. LOL. Never worry about making friends. I will post some pictures of my trip.

Please say some prayers for Avery's little friend Marlo. She is going in today for her 5th attempt at a port. I believe today is her day. THinking about you tons. Good luck.

HAPPY BIRTHDAY MOM, love you.

I ended up taking Avery to the local ER to get him port accessed and flushed. What do ya know, they were able to get it to flush. It was great to go somewhere local and not bring an overnight bag along with me. Usually I come with a suitcase and the laptop. Well not yesterday. Things are really looking up. I am afraid this blog my get a bit boring. OR, you could hear some more I ME. LOL.

Okay, so this weight thing. Hmmm. By body at soon to be 35 is meant to be at 120 and no less. No matter how hard I work, that is it. Granted that is not big at all but remember, I am only 4'11 and 3/4 height. But the great thing is I am getting pretty toned and buffed which I am enjoying.

I have been telling some friends that 35 is the age for me. The time where I am completely settled with my life and who I am. I am not moving anymore, getting remarried, having anymore kids. And I really know who I am and happy with me. Sure I could change some things but is that really going to happen. NOT. Rick and I are soo blessed to have the lives that we have. We have great jobs, great kids and great people around us. What more can we ask for. Sure more money but does that really matter in the scheme of things. Something we will never have so you we have to be happy with what we do have. I am sure many people may look at our family and feel bad for us or ask what we have to be happy about! Well we are happy with the little things, like not being in the hospital and just hanging out at home with our family or Rick and I being able to get some time away. Wow, this turned into a total rant, sorry.

I will be going away on Thurs. and I am excited but nervous. The typical mommy guilt. But looking forward to some me time. I am sure Rick can handle the fort. Plus the boys always know when NOT to be sick . I hope to meet alot a great people and learn so more info which could help my family. So I will not be posting until Sunday night. Wish me luck. Hope all is well with everyone. Hugs.

So I lost the weigh-in yet again. Grrrr. As I am typing, Rick is still sleeping, just kills me. I have been up with the kids for a couple of hrs. now as usual. This is why I am getting really excited about going to the conference for a few days. NO KIDS, NO MEDS, NO POOP, just me doing my thing. I am pretty excited about reading a book uninterrupted on the airplane. So I think this trip will be a good thing afterall.

Last night we went to a wedding. We had a great time. Caught up with a few college friends we have not seen in yrs. We had a blast, especially Rick. LOL. Why do you think he is still sleeping.

Mr. Avery is going great, just some concerns about his port. It was not flushed with heprin before he was deaccessed so I have to get him accessed before I leave and hope there is not a clot in the line. Keep your fingers crossed on that one. Hey we are going on 4 weeks and no hospital. We are doing great here. Think we are about to break our record. Woooohoooo

Mr. Isaiah is now into biting big time. I was sitting here typing and he just about took out one of my toes. He is like a shark. Gotta figure out how to handle that one. He is always on the floor with Avery, so I have to watch he doesn't take a bit out if him. On a good note, Make a Wish wrote to a local toystore for his playhouse. They are donating toys to Isaiah, we get to take him this week to pick out his toys. He will love that.

Things have been great around here. SOOO weird but nice. The boys have been feeling good. Avery is still a bit spoiled but we are trying to break him of it but he is just so darn cute that it is pretty difficult. Isaiah doesn't start summer school for another few weeks so I would like to do a few things with him to keep him active and not in front of the tv. I will have to be creative with that one b/c he is not interested in much else for too long. Avery does love the pool and hanging outside so he'll be doing that with us.

Did I tell you all that I am on a drs. strike. Yup. So sick of drs. and hospitals and really see no reason right now to make any appts. We need our summer off. I have been going strong with drs. appts at least 3x per month since Isaiah was born and I need a break. Weird b/c I feel like I am in trouble. Guess it is just obligation. Do you know I submitted my receipts for parking at Children's for reimbursment and since last Oct. it totalled over 6oo bucks and I probably threw some out. Still does not even include the food while we are there. So we will certainly welcome the financial gain from our dr. strike. I want my Friday's off for once.

Another weigh-in for tomorrow. I am feeling the win this week. I have been working hard at the gym for the past two weeks and really really want to sleep late for once. Wish me luck.

BTW, my sweet daughter won "Student of the Month" I am so proud of her. I get to have the bumper sticker on my van to show off Janessa's accomplishments. She is such a good kid.

Things have been quiet around here lately which is weird but a welcome change. After the past roller coaster yr. we had, I am looking forward to some quiet normalcy.

School is out on thurs. Janessa is so excited. She starts camp next week which she is not too thrilled about but she will be fine and it will be good for her. Isaiah will go to summer school during July and a bit of August which will be good for him. Avery has had his moments lately but certainly so much better then before. He is sleeping better at night which is wonderful.

Rick and I are going strong with our contest. I cannot believe how much I have been going to the gym lately. I am actually starting to enjoy it, hopefully it lasts.

I decided that I am definetly going to the symposium next week. I am looking forward to it now. I guess I feel more confident that Avery is doing better and is in good hands while I am gone. I could always change my flight if I have to come home early. Hopefully that will not be the case.

Other than that things are pretty good here. Janessa had her gymnastics show today so I will post some pictures this week of that.

GO CELTICS...........................

Happy Father's Day

A Dad is a person who is loving and kind, And often he knows what you have on your mind.He's someone who listens, suggests, and defends. A dad can be one of your very best friends! He's proud of your triumphs,but when things go wrong,A dad can be patient and helpful and strong In all that you do, a dad's love plays a part. There's always a place for him deep in your heart. And each year that passes, you're even more glad, More grateful and proud just to call him your dad!

Thank you, Dad...for listening and caring,for giving and sharing, but, especially, for just being you!

Happy Father's Day to all.

Okay so I am sure you are wondering the results of this weeks weigh-in, right!!!!!!!!!

Well the winner was...............................................................................................................

..................................................................................................................................................

Rick, man I hated saying that. LOL. only because he just gloats and gloats about sleeping late (which he does every weekend anyway). He lost 6 pounds. Which is great and I lost 2.5 pounds. His percentage was 1.026 and mine was 1.020. Ugh. I could really use a few mornings of doing my own thing instead of getting up to do meds, baths and etc. This weekend prize is a HUGE motivator I'll tell you. I worked out so hard on thurs. But it is all in good fun and for the sakes of getting Rick to lose some weight and motivation for me to keep going to the gym and looking as hot as always. Hahaha.

The boys have been doing great this week. Isaiah is still wonderful and happy. Avery sounds soo much better and is having much less respiratory issues this week. I think we are really seeing how spoiled he is though. He can be very fussy but the minute you pick him up and is magically better. I can see why he loves to be held but it is not really possible in this busy household. Basically no complaints at all this week.

I am really feeling like I am getting my nice quiet and hospital-free summer. Although we have only been on home 3weeks I am still confident that it is here. I am excited about having a summer of cosmos. by the pool with lots of friends over and healthy kids. I am due, RIGHT!!!!!!!

Isaiah's Day at the pool

He does not last too long but certainly enjoys the brief periods in the pool.

Avery enjoying the pool

Pictures of the Playhouse and Lift

I know it just looks like a shed but soon it will be equiped with a flat screen tv, ac and for toys and playmats for Isaiah to roll all over and do what he loves when we are in the pool. It's perfect for him.

So the pool as been open for a couple of days now and it has been kid mania at our house. Which is a double edge sword. I am so happy that Janessa finally gets to have kids at our house but at the same time the kids are here until at least 7:30 at night and my fridge will have to be indefinitely packed for the summer. Man I better start selling more hearing aids. LOL.

The lift is in just some electrical adjustments to be done. Isaiah house is finally in tomorrow am, can't wait to see it. So expect to see the next post with lots of pictures.

The big weigh-in is in the am. I have been working but big black petutie off, including intense workouts at the gym all week and really eating healthy. Except the wine, I just cannot do it. No way I can cut the wine out of the diet. Try as I may........ So just extra workouts instead. Anyway, Rick has already lost 5 lbs and I think I have only lost 1lbs. I am soooo losing this thing but am glad I can motivate him to lose weight. Who knew sleeping late was such a big incentive to lose weight. We all know how it is to lose the last 5 or 10 lbs. Impossible. I am so competitive and still hate to lose. I am really feeling that shopping spree though. I will let you all know the big weigh-in tomorrow.

Isaiah is doing great as ever, Janessa is happy as ever in her pool. Avery, hmmmm......................
Not horrible but not great. Sleeping at night is still an issue, thank god for narcotics. He is certainly less junky which I think was really allergy related. He still gets really stiff and does some weird movements but at this point I think that is him. THE NEW HIM. He does smile though. Can't wait to take him in the pool this weekend.

I will tell you all that I am just so blessed with the life we have. Just sitting by our pool with all the kids and the boys getting all the things to make their lives easier and just a blessing. We are such lucky people. Who would have ever thought?????

We are on a Roll Now

A few electricians showed up today, LOL. We were so desperate for the pool to get going that I called a few and Rick called a friend and I did not remember who was who by the end of the day. Anyway, our POOL IS OPEN. Hopefully we can swim tomorrow. Better late then never. This was just so big to us b/c we never imagined that we could afford a house with an inground pool. Rick and I have been through so much and we are so happy that we can provide our kids with their very own vacation home, yearound. We are so limited on what we can do with the boys so our home has to be it. We are just very blessed.

Avery had another GREAT day today, I am starting to feel confident that I made all the right decisions for him and he WILL be okay. I am also feeling better about going away especially if he stays on this path. Rick has gotten quite adept at taking him in to Children's for his tube change, he was in/out today.

Rick and I are going strong with our challenge, he sure is encouraging me to drink my wine though, hmmmm. Very, very tempting. But whooping his but is just so much more tempting to me. Let you all know who wins this Friday's weigh in. This sure is a fun way to be healthy.

Thanks for voting too, I just love to see others opinions and all the great comments. This blog was the best thing I ever did.

Ugh, the electrician never showed today which means that the pool is still not set up. I had to call a guy to come in tomorrow so hopefully we can start swimming on Thurs.

They are building the house on Thurs. bummer is there will be no walls, just wood boards so we will have to get someone (Ricks dad) to sheet rock it. It will take a bit to get it the way we want for him but still will be great.

Avery has had an AWESOME 2 days. WOOOOHOOOO. He has been sounding really clear, less fussy and no panic attacks. I think the AC is doing him good b/c it is keeping the pollen out. Although we was awake like 5 times last night. But I will take that over fussy and "on the edge" days. I just pray that this is the benefits of his surgery. His j-tube has a broken piece in it so Rick is going to the hospital to get it changed. No biggy.

Rick and I are doing a weight loss challenge together. We are doing it with weight loss %. We will do weekly weigh ins and at the end of the week whoever wins for that weigh-in will get to sleep late on the weekend and not have to do meds. and get both boys up. THis will go on for 6weeks and at the end of the 6wks, whoever wins will get a little shopping spree. This is great motivation for us b/c Rick and I have a hard time keeping focused. May the best woman/or man will. Wink, Wink.

Trying to stay cool

We are in a heat wave for the next few days and what do you know, our pool is having issues. The pool guy came on Thurs and our motor was blown and also all of our electrical. Janessa is sooo upset. It will not be fixed until at least this Weds. just enough time for the end of the heat wave. This is also costing us a pretty penny too. Whatta gonna do. The building of Isaiah's house will be this week and the lift is being put together today by my FIL and Rick and uncle. I cannot wait to post pictures of everything.

The boys are staying put in AC all weekend, they would not last 5 mins. outside in this heat. We kept Avery's port accessed just increase he did not tolerate the heat and would need IV fluids ove the next few days. His panic attacks seemed to be a bit more controlled with lots of reassurance that we are not going to torture him, love and drugs. LOL. He is still very junky and has been starting his day over the past few vomitting mucous wqhich causes him to be more junky but I think he prefers that rather than us suctioning him. He is quite a smart little guy.

I am getting nervous about going to the mito. conference which is in a couple of weeks. I will be gone fore 3 days and in Indy. I am just REALLY nervous to go too far from Avery at this point. He changes like New England weather, never know when he will be in crisis. I have a great nursing staff but WHAT IF........

What would you do? Would you go? My goal in going is to get to talk to a dr. that would be really interested in pursuing finding a mutation gene from the boys so when it is time for Janessa to have kids, she will not have the same fate as me. Also to meet some great moms that I talk to online often and share experiences.

Isaiah's day at the zoo

So far he has had a great day. His class when to the zoo and they are just all so good with him. One of the girls came in with a gift for him b/c she knew it was his birthday and ask her mom if she could buy Isaiah a gift.

Also he was approved by the town assessor for his house. Yahhooo. They will be building it this week. So exciting.

Isaiah

My Birthday Boy

To my sweet boy on his 6th birthday,

I just am amazed at how fast time has gone by and you are already 6, no longer a baby, toddler or preschooler but a school aged boy. Isaiah was one of those sweet surprise pregnancies which we learned on Janessa's first birthday. We were very excited although many thought it was a bit quick to be having another. I knew pretty early on he was a boy and was completely thrilled. Very easy pregnancy and a c-section due to his breech presentation, just like Janessa. So no ideas to what was coming. He was small at birth 5'11 but so was Ness. Crazy thing is when he was born, one of his toes were deformed and Rick and I were sooo devastated about it. Lord only knew that it was nothing compared to what was coming. He then failed his hearing test at birth which was sureal with being an audiologist myself. He quickly lost all of his hearing within a few weeks which was quite devastating. But we adjusted. Soon after he started having feeding difficulties and the poor kid with literally scream for 6-7 hrs. daily for months. So I knew it was not colic and something was not right. He has no head control and I called the pedi. saying I needed to be seen immediately b/c I thought he had cerebral palsy. It was worse then that....

My pedi. saw him and immediately sent him to Children's and within weeks they had a diagnosis. Mitochondrial Disease. Well if you have ever done your own research on it online it is aweful. I thought for sure he would be dead within weeks. He was doing so poorly at the time. He needed a muscle biopsy and a spinal tap immediately b/c his lactate was so dangerously high. He was then put on a experimental medication which miracously worked for him. Many kids fail on this drug. But God had a purpose for Mr. Zeek.

Soon after he got his feeding tube and he was the boy he was going to be. Sure he had many hospitalizations but nothing life threatening. Through all of this Isaiah has been the sweetest and most loving kid I ever met. He will stroke you while watching his tv for which he absolutely loves. He always enjoys teasing Janessa by pulling her hair. He is just very easy going until you change the tv station of course. He loves to laugh at anyone playing catch and just being silly. He has quite the sense of humor. He is my most easy going kid. Such a love bug and certainly God's gift. Isaiah gave our family a great appreciation for the little things in life and not taking it for granted. He was the kid that we thought would not live beyond 6 months and look at him now. HE is so smart talking in sentences on a computer and just a little stinker at time but healthwise is doing amazing.

We just love you more than you can ever imagine. and are soooo blessed that God chose us as your parents. Wishing you a happy and healthy 6th birthday at the zoo.

Wondering where we are........................................................................................................................................................................................................................................................

Home actually. Avery had a better day today. Just really convinced these are anxiety attacks for fear of being suctioned. My poor poor baby. He was a bit anxious today but my nurse was able to nip it in the bud. I am really thinking it is not his port although the dr. wants to get a Halt monitor which would look at his heart wave to see if there are irregularities especially since he got up to over 200 yesterday and as low at 80 within the hr. This would give them a 4 hr reading of his heart to see what it is doing. Suppose it can't hurt.

I am so bummed though, although Isaiah's wish was granted, we are having trouble with the zoning and the town. Sounds like they are pretty resistant to any changes in the zoning. This house has to be 7 ft. from all sides of the neighbors and it is on all sides except behind us. I mean are you serious. It is MAW. let's be real. We should find out in a few days. Please pray. It would make our summer life so much easier. We got this house so the boys could enjoy the outside with us and with Isaiah hating the heat so much this house would have been great for him. We could never afford to do this on our own. It just really stinks to be out at the pool with Janessa and the boys upstairs secluded with the nurses b/c their bodies cannot tolerate the heat. The other wish is fine (entertaining center) but this would have been great for him. I will let you all know what the verdict is but it doesn't look good.

Lately, I have been SOOOOO overwhelming tired. It is not like me at all. No motivation to do anything. So if you have called and I have not called back, please don't be offended. I know I am not pregnant and if I was, then someone is getting sued bigtime. LOL. Maybe things are just catching up with me. Although I am proud of myself as I just finished the "Pillars of the Earth" which was over 900pgs. Great read. Janessa is also really getting into reading which is good to see.

More Random pictures

Here is Rick and the Mass. State Champs and a few others

Today is the Day that.......

I just want to cry. Avery had a pretty miserable day. Alot more of the panic attacks. One nurse relieved another and they were just about in tears to see him like that and feel so helpless. Since I had nursing coverage today, I was just starting to enjoy my cup of java while at the bookstore after work today, when........ Rick called and said I needed to come home b/c Avery's episodes were much worse. His o2 was also dropping down in the low 80s and he needed some supplemental o2. His o2 is fine but his heartrate was going anywhere from 80-220 (his normal is in the 140s). So now it is 7 and he is still not sleeping even after increased dose of ativan, methadone, and we just added morphine per his Pallative Dr. I have been speaking to them just trying to figure out what is going on with him. She heard him over the phone and was concerned. We are really trying to avoid going into the hospital b/c not really sure what they can add to the picture and it will probably take 5 days there to figure out nothing. We are also questioning if it is the darn port. Remember while he was in the hospital there were concerned about how deep his port was and causing issues. We are thinking that maybe it is a port issue. The dr. was thinking it could be tickling in his atrium possibly causing these anxiety attacks. So we would need to be worked up AGAIN and ultimately need the port pulled back if that is an issues. So sounds like at least another week stay. GRRRRRRRR.

Some good news though. Make a Wish called today and granted Isaiah his wish. They will be building his playhouse near the pool in the next few weeks. Yay. They will not put the tv in which is fine so we will have to get him a tv and put an AC in it. We are thrilled for him. He and Avery will get to hang out near the pool and still watch their tv.

Let's all hope we don't have to go the the hospital tomorrow. I will be soooo bummed. I will let you all know.

Things are about the same. Avery is still having what we can only describe at "panick attacks". Honestly, it is the most bizarre and upsetting thing. When he gets worked up, he gets junky and cannot get himself out of it. Despite what we are giving him to calm him down is not working for him. We don't know if it is anxiety b/c of pain or fear of being suctioned (which is horrible b/c he really needs it). He usually starts off his day pretty mild but by the time he gets up from his nap he is just a wreck and he then has trouble going to sleep. Lately he has not be falling asleep until at least 10pm. I really hope this is all related to the swelling from his tonsils and will go away soon b/c it is just aweful to see and worrisome.

Isaiah is going to be the BIG 6 on June 5th. Still cannot believe it. I think we will be taking him to see Kung Fu Panda at the IMAX. He will just LOVE IT. He also has his school trip to the zoo. Lord I hope he is healthy for it after all the fighting it took to get him to go.

I am so upset b/c one of my favorite websites has been down for at least a week and I feel so disconnected from the other moms which are such a support. Really hope they can get the site back up.