Thursday, June 26, 2008

Break - Coming soon

I am so excited. Jay and I just coordinated a few days off next week to spend time together with the boys. I have not taken any time off of work (for fun things!) since February. As you can tell from previous entries, we are ready and due for a break. I just hope the weather holds out and we can have some fun outside.

Updates for this week -

Fin is sick. Well, not really sick....just running a temperature. I took him in yesterday and they could not find anything wrong. As of this afternoon he still has a fever and we will be going back in to the Ped tomorrow. It is low grade and the Doc said that I could wait to see how Friday is but, I am all over this stuff and have already made an appointment. Mama does not mess around with a sick baby!!! Fin is miserable. He is very fussy and will not eat. That alone tells me he is not feeling well. Fin is not known to EVER pass on food. I will keep you posted on how he is doing. Please pray for him that he is feeling better soon and that the fever is just something very, not serious! You know how my mind can be a bit crazy!

Carson is doing okay this week. He has been really clingy too and even cried yesterday when I left. This is not like him at all and really reinforced the idea that Jay and I need to take some time off to be with the boys.

Carson has really gotten into the movie Cars this week. He calls Lightening McQueen - Lightening Between. I love it and don't correct him on this.

We are actively potty training although we have yet to have any pee make it into the potty. Yes, he is four and yes, most kids (even boys) are potty trained by now....remember he is about 2.5 developmentally. We have just not felt that he would understand up until now. Given the lack of pee in the potty, I still am not sure he "gets" it but I know that he will eventually. Seems like every week we are putting that poor kid through something. Last week it was chelation, this week potty training. No wonder, he is a bit fussy lately.

Jay and I are looking forward to the 4th celebrations. We will have a picnic with the Facciolla's, a swimming party with the Bolone's and a day at the farm with the Krawczyk's. The two additional days we are taking off of work we are reserving "just for us - family time". We have had so many wonderful celebrations this summer but I can't remember when we did anything "just us". We will see.

This Sunday we are going to the Grosse Pointe Fireworks. It is one of my most favorite family traditions. I think Carson will really love it. Fin might be a bit scared but he will be okay. My Papa lives there and we can watch the fireworks mosquito free from the inside of his screened in porch.

Amiee, Ron, Luca and Adrian came over last night. Jay had a work dinner and we got to visit. The boys were total entertainment. There is just something about four boys being together that brings out the loudest, most active and yes, sometimes argumentative natures they have. The best part of the night was Adrian, Luca, Amiee, Carson and I snuggled in Jay and my big bed and watched Toy Story. Kids amaze me in how they can watch the same movies, over and over again!

Not much else to report. I have to thank Jay for all the kind things he says about me on this blog. We did have so much fun together last weekend. We have been married for almost 5.5 years and I have to tell you - I adore this man. Not only do I love him but I really, really like him too. Yes, being married to your best friend is...well, it is the BEST.

Love to you all and have a great night.


Sunday, June 22, 2008

A little refreshed from yesterday

Hi Again!

Wow, it's amazing how a fun night out can change your mood. Emily and I had such a great time last night. We were just at a little hole in the wall bar but the music was great and it was so nice to see our friends. I was listening to music and no one was asking me to play the weird! Eric and Lisa have been friends of mine since junior high....about 20 years now. It was nice to be out celebrating Eric's birthday with them. My cousin Dan went with us and we had a blast as usual with him. It's so weird being at a bar with him drinking now (since he just turned 21) but it's so great to have such a close friendship with him. Emily and I both love him so much. He cracks us up. My cousin Paul was also there and it was great to see him too. I feel so old with my little cousins at the bar.

Both Emily and I were so exhausted before we went that we were like, "are we really gonna do this?" The plan was to head up to Granny and Papa's about 8:30 so both boys would fall asleep but of course that didn't work out. Once we got there, Em laid down with Fin in their bed and both of them fell asleep. I had to wake Em up to go out. Too funny! I guess Carson wound down after we left and fell asleep. I'm so glad we went. The best part of the night was just being connected to Em. It was like when we were dating for a few hours. We drank and laughed and danced and yes....made out on the dance floor. Fun stuff! Our life has become such a routine and so focused on the boys and getting Carson better that sometimes we lose touch of each other. It's nice to enjoy each other and realize how much we're still in love. We talked about it this morning on the way home. It was very nice. It's such a gift to be married to your best friend.

I've also enjoyed the boys so much today. Emily is at a baby shower and the boys and I are home....don't have to go anywhere or see anyone or chase them favorite kind of day! We laid around and watched cartoons all day (in between the million loads of laundry.) Griffin is down for his nap and I just saw that Carson has fallen asleep in our bed. Emily is on her way home so I think that we'll join them for a nap! Heaven!


What I am about to fill you in on - can be uncomfortable for some. There are a few things I hate to talk about and MONEY is at the top of my list.

For one, it is personal. For two, I seem to always get myself into trouble with it. For three, well it can be depressing.

I have toyed around with posting about this because I don't want anyone to think it is a "feel sorry for us" post. I really want to emphasize the issues that parents of special needs children go through.

A few posts ago, Jay mentioned that I will soon be a part-time employee. He also mentioned that more than half of my income goes to daycare costs. That is true.

When I look at statistics by our government and they say that the average family of four makes a median income of 40,000 per year - I laugh. That is crazy to me. I can't imagine how a family of four can survive in a safe residence, eat and have a car on that income. Without cable, brand name clothing, etc. it is still impossible to me that anyone could live on 40,000 a year with a spouse and two children. Then I get to thinking and realize that our "normal" is not the average.

When we read the books and attend the seminars on autism they always bring up the issue of extra cost. An average we hear is that it is an extra 500.00 per month for families of children on the spectrum. Yeah, I know our diagnosis is confusing but we we do know that Carson is on the spectrum so, we apply in this instance.

I thought it might be interesting for a few of you to see what we do incur with our treatment plan and additional life costs due to Autism.

Day care - we cannot trust that a traditional daycare situation would provide Carson the one-on-one time and attention he needs. We cannot trust that he would be okay in a large, loud room with 20 or so additional kids. Even at his school he struggles and it is only a half a day and there is a teacher and aide and 12 students max. So, we have in home care. Carson does much better in his own environment and with his own things. We can be sure that his diet is followed and know that he is safe and well taken care of. To the cost of - $1,600+ per month. Traditional daycare of two kids is estimated to be 1,200 per month. So, right there we are up $400.00+ if neither of us are running late.

Food - We do not have the luxury of the typical preschool diet. All of Carson's food is GFCF and most of it is organic as well. We shop at Vince and Joes and Whole Foods several times a week to replenish what he eats. When we go ANYWHERE we bring him his own food. For example, I made him some cupcakes for a party a month ago. The GFCF cupcake mix was $5.50 and the frosting was $6.00. In total $11.50 to take cupcakes to a party so that he does not feel left out. You can buy a whole lot of Duncan Hines for that! Carson loves pizza and we have found some great GFCF pizza for him - at $7.00 per 8 inch pizza. I would estimate that our food bill is about $200.00 higher per month than the typical preschool diet.

Supplements/Vitamins - Just this week, Jay filled Carson's b-12, and chelation script. The total for one month supply $305.00. It is possible we might be reimbursed some part of it but we cannot plan on it. Add to that the 7 or so other supplements and $20-$30 a piece per month at you have about $480.00 a month. Yes, we choose to take this approach and not all families with ASD do. We see it working and we see it as money very well spent. If we did not, we would have stopped long ago.

OT/PT/Speech - We do have the blessing of insurance for some of this but we still have co-pays and some out of pocket expenses. I would estimate we spent $100.00 per month on out of pocket OT/PT/Speech per month.

Doctor Visits - Jay and I have done a great deal of research finding the best doctors for Carson. Our first functional medicine doc was out of Lapeer and we paid for all of Carson's testing out of pocket. The Doc did not take insurance. Testing in November - $3000.00. Again, money well spent and I would do it again in a heartbeat but - that was our fence or our deck or our partially finished basement or our next family vacation! We have recently found a new DAN doc that does take insurance. We have to truck it to Ann Arbor once a month and the gas does add up but it is still much more affordable.

Toys/Therapy at home - We have purchased or gotten as gifts several things that are used as toy therapy in our home. We have a trampoline, tire swing, games, puzzles, etc.

All of what I just mentioned adds up to an extra $1,400 a MONTH (yes I said per month) of life expenses the average family does not even think about.

So you can see that for me, $40,000 per year for a family of 4 is ridiculous. Jay and I are fortunate that we have good jobs. That in the big picture we make a good living. We have a new house that we love and affordable cars. We have clothing and all of life's necessities. This is just one area of our life that we feel the hit of autism.

Again, this is not a "feel sorry for us" post. I know of other families that are struggling with much more but I am also not going to lie and say that this does not add a huge dimension of stress to Jay and I. When we think about all the extra money we could be saving it makes us sick. Nothing is more important that helping our children but it does contribute to depression sometimes.

I guess all I wanted to do is share this private part with you since you all seem so willing to listen and to care. Most importantly when you go to vote this fall, keep these issues in mind. You may feel like they do not concern you but, the truth is, Jay and I never thought they would concern us either.

Saturday, June 21, 2008

What a day, What a day!

Hi Everyone! Sorry to have made you wait a whole week for another blog. I'm sure that you are on the edge of your chairs waiting to hear about our interesting life - haha!

It was another crazy week. We started Chelation on Carson. Our Dr. uses the rectal method, which is a blast. Tuesday - Thursday every eight hours, we got to shove a suppository up where my finger should not be. The point of this is to pull the heavy metals out of his body and into his urine so he also had a sticky-topped plastic bag attached to his poor weenie to catch the urine since we're still in diapers. One of our goals for ths summer is potty-training....hmmm seems like I've said that before. Oh well, the urine will be sent in and we'll see how many of the heavy metals were pulled out. We get to repeat this in two weeks and then in another two weeks after that. See what we have to look forward to. Our new sitter, Laura (a friend of our future sister-in-law Niki) started this week. The boys loved her so that went well. She's splitting the week with Nonna for the summer. She's a kindergarten teacher, which is great, because she'll get to work with Carson on some of his skills as well.

The week flew by as usual because there were a million things going on. Emily went to a gold party Monday night and made us a little fast cash, which was nice. Thursday, we had a dinner with a colleague of mine so the boys stayed the night at Granny and Pa's, which was a treat for Mommy and Daddy to have an adult dinner. Friday, we headed to therapy after work and then to Nonna and Papa Tom's for a bbq. Carson and Griffin had a blast in the sprinkler with Adrian and Luca.

Today is when it all went down hill. We started out at Em's company picnic. The first half hour was okay until Carson spotted the band and then we had the same problem as we did at Cousin Josh's graduation party. Carson thinks that every band is like the Wiggles and that he can play their instruments. Next thing I of the band members kindly let Carson play the drums. Cute but the transitioning problem is definitely one of Carson's autistic traits. Transitions do not go well. Em explained to the band member that Carson was on the spectrum, thus the fit. The guy was very understanding as his son has Aspergers, which is also on the spectrum. It's so refreshing when you meet someone who actually feels your pain and understands your situation. We tried going to see Mommy and Uncle Ron's offices as Carson screamed "Carson play the drums" over and over again. Shortly thereafter, I had to leave with Carson. One event down, two more to go today. I had an appointment so I took him with me. All the way there and back....I heard "Go to another party...Carson play the drums." Oh my God! I was like "Shoot me now!" We came home in time to change his clothes and head out to Cousin Amira's Open House. Well, let's just say we're two for two today. I had to leave with the boys after one hour. They had a bounce house, slides, etc. but what does my son want to do? Play in the neighbors driveway in some broken down play house in the pooring rain. Carson has to be the most persistent child I've ever seen. I have to was some of his worst behavior in a long time....I have to keep telling myself that he doesn't understand everything like he should....stay clam Jay...stay calm before your head explodes. I've come to realize that there is not one single thing that we do or one single family event that is relaxing for us. Please someone...tell me this too will pass. Of course, the second we left the party, he fell asleep in the car. We only had a ten minute ride so I took a little pleasure in waking Sleeping Beauty up. A nap at 6:00 p.m.....I think not. The boys are staying at Granny and Pa's tonight while we attend our friend Eric's birthday! I'm exhausted but boy do I need a drink! I'm hoping for a second wind here soon. I'll have to keep it to a minimum though since Emily has our friend Margie's baby shower tomorrow so I'm on my own with the boys.....I certainly don't need a hangover for that or it will be a long day! Take Care! Thanks for listening to me vent!

Saturday, June 14, 2008

What a week so far!

I hope that each of you had a good week. Ours has been crazy so far! Emily was very busy at work putting together presentations and meeting with department heads. It's funny how she's been working this way (as a department head and basically her whole department since her previous boss left) for nearly nine months now but has not received any type of pay increase. I feel bad for her. She works so hard and is obviously unappreciated. If nothing changes by the end of August, we're going to do whatever it takes to allow her to leave and stay home with the boys. It's one thing to be a working mom but it's a different story when you're being taken advantage of and more than half of your income pays for child care. You get to the point where it becomes silly to stay.

It's nuts at my job as well. Thursday was like an episode of Survivor (and I thought I just watched the season finale.) All day long people (indirects) were being called in and losing their positions. There were at least 20. Thankfully, some people who had come from other positions such as production, have an option to go back to that position. The automotive market is so bad right now, I think that it was expected but it was a gloomy day at work. I'm very grateful to still have my job.

Yesterday continued the craziness. As I said, the boys and I went shopping with my mom to get some of the gifts that we need for the upcoming weeks. We ended up at Somerset and Emily met us late in the afternoon. The nice lady at Gymboree was letting Carson blow bubbles in the store as we looked for a gift. Carson had to be at therapy at 4:00 so we were pressed for time. The time came to leave and of course, Carson had a meltdown. He had been great all day but it was a long day and I was ready to have a meltdown of my own. We had to get on the elevator but there wasn't enough room for all of us so Em got on with Carson because she was in a hurry and my mom, Fin and I waited for the other side. Carson was yelling and crying and apparently some rude grandma who was on the elevator with her daughter and grandbaby said to her daughter "How long did it take you to get the baby to sleep?" because apparently, Carson woke up the baby so Emily fired back with "My son has Autism and it's not always easy!" as she got out of the elevator. Go Emily! Thankfully, I wasn't there. I'm just picturing the grandma because the people shopping at Somerset are hilarious. My mom and I were cracking up all day because some of them go shopping in evening gowns. It's like a Hollywood fashion show. Come on people, you're in the midwest! Emily cracks me took me back to last year when two twenty-something snobby girls were staring as Carson had another meltdown and gave him a dirty look. That time Emily followed up with an "F - U!" I love Emily!

We're now moving in to what will be one of the craziest busy weekends in our summer. Emily is about to leave for Tom and Niki's (Em's brother and his fiancee) bridal shower, which will last for a few hours so the boys and I will get a head start on her this afternoon as we head out to Brooke's (our niece) first birthday party, where she will meet us for a few hours and then we'll rush home to get ready for Cousin Dan's 21st b-day bash. We'll be heading out on a limo bus to three different bars. Our day started at 6:00 a.m. and will probably end about 3:00 a.m. Nice 21 hour day! As if that isn't crazy enough, we also have Adrian's (our nephew) b-day party combined with Father's Day at Amiee and Ron's (Em's sister and bro-in-law) tomorrow. Today is also Uncle Roger's b-day and tomorrow is Grandpa Dennis'. Thankfully, we'll be with them later today and tonight to celebrate. It's all fun stuff but just too much at once for me....BAH Humbug! I need some rest!

Friday, June 13, 2008

Going to the Doctor (What's new?)

Hi Everyone! Thanks for reading. We've been slacking this week. We didn't have power Sunday - Tuesday night. Fun stuff! I'm home with the boys this morning and then we're heading out to buy the 5 million presents that we need for this weekend. haha Emily is at work but may meet up with us later.

I just wanted to fill you in our doctor appointments from last week. Thursday, I took Carson for his 6 month visit to our pediatric neurologist. The nurse practitioner that we meet with was very impressed with his progress. His language is really improving. She assured me that he does not have autism, a couple traits but not enough. I asked her if we should call it an ASD (Autism Spectrum Disorder) and she said that since the spectrum is so huge, he could fall somewhere on it but to not even use ASD when talking with the school because they will want to change his classification and she doesn't feel that would be appropriate. In her opinion, the proper thing to say when referring to Carson's challenges is that he has developmental delays, both expressive and receptive language as well as some fine motor delays. She said that many children have developmental delays but are not autistic. She says that she can't say exactly what things we are doing to help him are working but she believes that it is a combination of everything (diet, therapy, supplements, vitamins, etc.) and recommends that we keep doing what we're doing. I felt ecstatic leaving that appointment. We go back in six months.

Friday, it was off to Ann Arbor to see the DAN doctor for our one month follow-up. Keep in mind, since last month's visit, we've started more vitamins, liquid zinc and magnesium as well as B-12 injections every other day. We were there for about an hour talking with the doctor while he observed Carson's behavior. I'd like to share some of the doctor's notes...."4 year old boy here with parents for follow-up of biomedical therapies for developmental delays. Last seen 5-2-08. Previously significant behavior problems have basically disappeared. He is talking well now. He has been on GFCF diet for six weeks and B12 shots for a month. He is clearly going through some typical toddler testing behavior and is quite persistent. Saw peds neurologist yesterday. Current supplements probiotic, CL, B6Mag, chewable MVI, zinc, mag, CoQ10, B12 qod, Melatonin 3 mg at night. Stool culture negative for yeast. Porphyrins suggestive of mercury. Happy, obstinate. Obviously on battle of wills with parents. Talking alot. Whining at times. Delayed but not autistic. He tantrumed and then gave in and cleaned up the toys and was very proud."

It was a great appointment. Our plan of attack is working! We were so happy! The next step is chelation. I picked up the suppositories today. For three days, we have to put one up his rectum (sorry Carson, one day you'll thank us...hopefully, you don't like things shoved up there...haha) every eight hours. They are supposed to absorb through the anal wall and pull all of the heavy metals in his body into his urine. On day two, we take a urine sample and send it in to see how much was pulled out. Hopefully, this will be another big help. Time will tell.

Cousin Dan went with us to Ann Arbor for Carson's appointment and showed us his new house on U of M's campus that he will be sharing with ten other guys. I've never been there. The campus was beautiful....the house not so much but I never was one for college community living. We laughed a lot. The highlight was when we were walking through campus near the library and one of the students held the door open for Carson to run into the library (aren't U of M students supposed to be smart?). Carson ran through hysterically laughing and went on one side of the bookcases and kept looking at me laughing down each aisle since I was on the other end and could not catch him. There were tons of students studying so I'm sure they loved all of the noise. Finally, Dan came in the other side and caught him. He's quite a character!

Tuesday, June 10, 2008

You feel better now

Carson has a little phrase that he says when he wants his way and we say "no". He thinks that if a few minutes later he says "you feel better now!" he will then get his way or what he wants.

It is actually, very adorable and one of Jay and my favorite things he says. He also says it when we are playing chase and we need a break (because we are old and out of shape).

I mention this today because for the past few days, I have had the blues. We all get them from time to time. I know that in the big picture, what our life involves is small potatoes to the trials of others, but I get blue occasionally nonetheless.

Work is crazy and I am getting really burnt out. I want nothing more than to be home with my kids enjoying them instead of working my tail off to come home tired and stress about the next day. Some of you know about the events at my job and although, I am flattered by the projects I have been given, I have been waiting for almost a year to have my salary match. Top it off with Jay being in the same situation and you have two parents that are overworked and spreading thin.

Our life is wonderful. We have a huge family and many friends. We are so truly blessed. I feel guilty when I get these blues because I know all that.

I just feel so rushed all the time. I just feel such a constant state of anxiety all the time. Yeah, I know there are meds for that :)

I guess what I wanted to say is thank you to all of those that help make our lives more wonderful. I realize that without this wonderful circle of family and friends our life would be that much more overwhelming. You may not know it but you all do make a difference.

When I think of you - I do feel better now!

Monday, June 2, 2008

Cute pictures from a bad idea!

Have any of you moms out there had some big ideas of a fun day out with your family only to have your idea turn to crap. Well, that is what this entry is all about.

Monday of Memorial Day weekend, I decided that it would be tons of fun to take the whole family to the nursery to get some flowers to plant. I have two large planters and wanted a hanging basket as well. I also had my heart set on Carson and I picking out and planting a pot just for him.

Suffice it to say that, yes we had fun all weekend but by Monday, both my kids were sick. They both had some weird allergy thing. Carson had a rash all over his face, either from rubbing the snot all over or the new sunscreen I tried.

Jay was just going along with this plan to make me happy. He was the last person who wanted to plant flowers. He wanted to spend his day watching shows on the DVR, and finishing up a few odd jobs around the house.

I talked him into it and we were off. First stop, the nursery by the side of the road on 26 mile. I wanted to go here first as I did not want to spend too much money. The selection was crappy but the real fun started by trying to keep Carson from running on to 26 mile road. The fun continued as Griffin fussed in the stroller and Carson became obsessed with the watering of the flowers and decided that that was all he wanted to do. I had the fun task of trying to find blue flowers (the only color Carson wanted to plant. Yes, I had asked him and had this coming).

An adorable pic of walking into the nursery. Carson even had his watering can with him. I failed to mention that it was almost 80 degrees out and I dressed my sick kids as if it were cold. I am sure that made them feel better.

Does this face look like he feels well? No, not too much. I ignored this as a sign. I saw my vision of a fun family day picking out flowers and darn it, I was going to make it happen. From now on, I will heed the warnings.

This is Jay, just as thrilled to be there as the kids. He just dragged that empty thing around following me saying things like "just buy something", "I don't want to go to Weigands", and "they all look the same".

They look a bit happy, but let me tell you, they were NOT.

We never found anything at the place on 26 mile. We did end up going to Weigands. I picked out some purple and yellow arrangements and got some soil too. Carson was obsessed with the fountains and fish so, that kept him busy. Jay was on board at this point as he knows I am just trying to make memories. We loaded up the car and headed home. I realized after our purchase that I bought De La Salle themed flowers for my house. I am expecting someone to come over with a flag for me at any time.

Once again, Carson cared for nothing else except the hose and watering the flowers. Griffin was trying to get in on that action too.

Still not looking like he feels well but I have since removed his hat and sweatshirt and I am sure his body temp dropped allowing him a few minutes of fun to water the flowers.

Do you even have to wonder? Carson had a great time drenching Fin with the hose. Poor Fin. There will be a day when he can fight back. We had to forgo the camera at that point as we did not want that wet too.

All in all, it ended up okay. Jay moved the pots and I did all the work. I sometimes, wonder why I think of all these things that just end up making more work for myself. Oh yeah, I want to make memories. I think we did. Even in the craziness, we still have fun!

Caterpillers, Trampolines and Pools - Oh MY

More pictures from the memorial day weekend.

Carson was very brave and let a caterpiller crawl on him. It took all day of him being intereseted before he was brave enough to let it go crawling up his arm. Shortly after this pic, the bug kept crawling and he freaked out a bit. Luckily, the caterpiller was okay. That did not stop him, he was a bug man this whole day.

Griffin loved the trampoline at Lora and Jeff's house.

Of course, Carson loved it too.

Lora and Jeff have a great house for entertaining. With the big backyard, pool and trampline, my boys were in heaven. Carson played by and in the pool all day long. The only break was to jump on the trampoline. Needless to say, they were both asleep before we got out of the subdivision. Jay and I enjoyed the quite ride home.

More pics to come.


Babies X's 4

Yes, we are doing fine. Just been very busy with all the fun summer activities. We had a great memorial day weekend and totally enjoyed the extra day off of work. Both Jay and I have had some big, stressful projects at work so the family time was not only needed but helped restore some balance.

The boys enjoyed all that we had to do. I know that Jay mentioned some of our plans in another post, but here are some cute pics.

Griffin had fun playing in the baby pool with his cousins.

All of these cuties were born within 7 months. L to R - Sophia, Madeline, Lilly and Fin. Madeline is the oldest and Fin is the youngest. I know they will grow up to be close and love one another. Fin will be a wonderful husband someday with all these young ladies around.

I love this picture of Madeline. It cracks me up. What a doll!

Congratulations Sophia! She is going to be a big sister in December!

Lilly is such a joy. She is one of the happiest babies I have ever seen. I wish they lived closer so that I could eat her up more often.

More pics to come. I am still not very good at this stuff.