My Dad.

I cannot believe Christmas is so close. It just happened so fast this year. I am all shopped and wrapped for the kids so I feel good about that. I just wish I had one present this year but it will never happen, I cannot believe he is gone it seems so hard for me this year. Although it is hard every year this one is going to be rough. I think I hate the pretending like it is OK for the kids. I never want them to see how sad I am so I do my best but I can't promise that this year. And I don't know why I can't but I just know it is going to be one of the toughest years so far.

I think about the fact that he always wanted a son and that I have his first grandson and I know he would just adore Chase. Chloe would have been a such a big part of his life. She loves to fix and clean things, she loves to sit and listen and I think sometimes he just wanted that from us girls and we were too busy with friends, the phone, and boys. Plus she is just like me in so many ways and everyone knows how him and I felt about each other!! LOL I wonder everyday what it would have been like for him to be a grandfather. How he would be at my house all the time, and spending his annual August month long vacation with my kids.

I spend a lot of days thinking to myself why Christmas? why the best time of the year? but when I think of what he would say I laugh. He would come out with some crazy reason like it if wasn't an important day you girls would forget! I hope when Chase grows up and has his own family that he is just like my dad. I know he looks down now and is so proud of me. he always loved Sean and was truly happy when I started dating him, I just wonder if he misses us girls arguing,the smell of nail polish remover, boys calling,someone always beeping outside the house, or our crazy outfits.

I guess it will get easier one year but this year is NOT the year!


R.I.P Dad 12-25-01

hello

Hello everyone! Nothing too exciting going on here except exhaustion! Chase is going for some new test soon so when I have those results I will let you know. Chloe's last day of school is Friday and her teacher is so sad she is leaving, she needs to go to Easter Seals where Chase goes because she needs some therapy.

i can't wait to come home in Jan I miss my family so much. I am excited to see my nephews and all the kiddies well their parents to I guess!!!LOL. I will be st my sister Jamie's so stop by if you get around to it. It is so hard to see everyone while I am there.

Ok I can't type my child is screaming!!!!!

Love you!!

Happy Thanksgiving!!!!!!!!

Happy Thanksgiving everyone. Hope you enjoyed your day with your friends and family. We had a very quiet day and it was actually very nice out here today. Just Chase and I went to the Nicu to deliever Thanksgiving dinner they were all so thankful and excited to see Chase. Sean stayed home with Chloe she really hasn't been feeling well she took a nap at 10 am and woke up with a 102 fever so I could never bring there in fear that she would get those tiny babies sick.

My first turkey came out pretty good I was glad I didn't ruin it! now I think I am getting sick so I am heading to bed. Goodnight and enjoy the pictures

new pictures!!!

Ohhhh Fuddy!

Well well well..... Chasey is at it again. Spent the last few days in West Boca Medical Center. Something more than just asthma is going on and I knew this because he was waking up in a Asthma attack the last few times. I wanted to go to Boca because I needed to let his Pulminologist see him in this condition and at Bethesda he is not a participating Dr.

So 4 days later they detrmine that he is probably aspirating back into his lungs. So they were going to put a feeding tube in his nose for a month to see what happens but it never happened because the dr wanted to get him out of there. The girl next to him had a staph infection and a boy a few doors down have roto virus so they got me out of there really quick.

I foloow up tomorrow with the gastro Dr. We will see what the next step is.

On a better note I found an awesome park today!!!!!!!!!! It is fully equipped for a handicap child it si so awesome and the kids had a great time.

BIG NEWS

Hello! Hope you guys are freezing your buts off in NJ!!!! It has been really nice the last few days here. I have been soo tired lately not sure why? I am not pregnant so don't send me emails!!!! 

I went to the school today and chase was in therapy and he was standing with his new leg braces he looked sooo big. NO REALLY! I guess because he doesn't stand a lot I really haven't notice how much he grew.  He is a little above Chloe's chin. so crazy that he is 2 years younger and almost as tall as her. Lately he reallllly wants to talk and I wish he could, he tries so hard but it just doesn't come out or it does but I have no idea what he is saying.

This was a tough week. We were really hoping that McCain and Palin got into office but it didn't work that way and that's OK I will accept him and hope he does do the best for this country. And I will never bad mouth him like many have done with George Bush. He is still the President regardless whether I agree with his beliefs. It was nice to go to the polls with our children and for Chloe to see what was going on and explaining what we were doing. She was very involved with all the president stuff. My biggest fear is that funding might get cut for special needs children and that scares me. 

We decided that this year for Thanksgiving we are going to go to the NICU where Chase was born and bring the nurses and doctors Dinner. We have not been back to visit to many times since the baby was born so it is time we go back and express how thankful we are for all they have done for us.

OK I have to do some work so hopefully I will update in  a few days!! OHHHH wait I am not done how could I forget this!!! We have been preparing some stuff for Chase to possible go to Duke University. When Chase was born we saved his cord blood and now we are trying to re infuse that back into his body because we have seen great results with cp kids. Here is a video of a little boy who had it done.http://www.youtube.com/watch?v=PT4ydxomnQ0 

Please pray that Chase is a candidate!!! you guys have come through before! OK off to bed can't believe I could have forgot that.

Thea 

Some videos of my crazy kids!!!

Just an update.

Hi everybody!!! Just a little update. Chase is doing really well lately. The new meds for his sleeping have finally kicked in and he has been sleeping for quite a few hours at night. It feel so good to sleep again. He is happier and has been really healthy overall we did have some problems with seizure like activity again but they uped his meds and he seems to be doing great.

My new van is sooo great and it was a little chilly today so I used my heated seats!!!!!! whoaaa. I heard it is so cold in NJ and I def. don't miss that! Tomorrow I am taking the kids to get there xmas pics done with my friend Stacy who also allows me to work for her so I can earn extra cash and I love her for that. This year we are having rock star xmas! lots of plaid and spiked hair sooo fun. Oh and the Halloween party went off great!!

As some of you know I have cancelled my myspace, it is a long story but I will come back on in a few weeks. I have lots of pics and videos so let me post them now. Miss you all!!!!

My sweet husband.......

So lately I have been having a hard time accepting a situation. Last night I was explaining to Sean that I just feel like people blow Chase off because he can't talk,walk, react or understand a lot but he is still a human being and he still has feeling. It just really hurts me and maybe I am just over reacting but I feel like it happens a lot. People will look at him and then go right to Chloe or only talk to Chloe like I am not holding him in my arms.

And he does understand. My sister Jamie will call just to talk to him and he reacts to her like crazy. He knows her voice and you can see him just light up. he loves to tell her HI over and over and even though that is all he can say she doesn't mind and he thinks it is great. I wish everybody understood him like Sean and I do.

Well I just opened my email from my husband who is trying to make me feel better and found this( he might be mad at me but I asked him where he found and he wrote it and I think it is really cute and to the point)

Just Because He Can't

Just because he can't say hi,

is that a reason to not see him?

Just because he can't say Thank You

is that a reason to not give to him?

Just because he can't say how much he misses you

is that a reason to not call him?

Just because he can't catch a ball

is that a reason to not play with him?

Just because he can't kiss you

is that a reason to not kiss him?

Just because he can't read

is that a reason to not send a card?

Just because he can't squeeze you back

is that a reason to not hug him?

Just because he can't say I love you

Doesn’t' mean you shouldn't tell him.......

Sorry it has been a while.

Life has been so crazy. Chase never sleeps and I know that you think I am kidding but I am really not. I have tried Motrin, Benadryl, muscle relaxers, weighted blankets, putting him in my bed,music,TV, and sedation medicine that they give you before surgery ( ALL WITH THE OK FROM MY DR OF COURSE) and Nothing!!!!!!!!! right now he is sleeping in this hugggge bean bag chair that I borrowed from Easter Seals. We will see!

Other than that he has been pretty healthy over all just the sleep stuff. I have the kids pumpkin decorating party this weekend so that should be fun. I am so ready for winter here. It is just still so hot. I like it but cmon already like cool off just a little!!!

Chloe had a birthday party this weekend and had a lot of fun. It is nice to go out with just her once and a while. She is being a very good girl lately and so helpful she just really misses our family in NJ a lot she tells me everyday but is starting to blame me less and less so that is good. LOL.

Miss Deb is back and that makes Chase so happy! Although he really loves his Miss Shari so Deb better watch out she has some competition!!! His other teacher is leaving in Nov. for a very long vacation and he will miss her she make him the best smoothies! I went to his school today for firetruck day it was cute but he was very nervous. I think he thought it was the ambulance coming for him. I hate that he actually knows that sound and knows that it is not good. Oh and he is standing in a stander machine sooo awesome!

I have a farm breakfast for Chloe on Weds. and the horses coming to Chase's school that day too. So supermom will spring into action and try to do both. Should be fun. Up the bean bag didn't work! Gotta go!

I have a new car!!!!!!

First of all Thea Chimenti drives a minivan. WHO would of thought??????? But I am so grateful for this car and it is some car! It is all leather,DVD player, navigation system, xm radio,heated seats and mirror, a sunroof, awesome radio, and the best part is a great wheelchair ramp for my oh so precious little boy.

I was starting to wonder about people whether there was still good people out there and boy did god show me I was wrong. Mr. Snow and his family are the nicest people. I cannot believe they would just hand over this car without asking for a thing in return. I am just so amazed I don't think people realize how truly happy I am. I will make sure that Mr. Snow knows just how grateful we are.

I cannot go without saying thank you to Laurie and Michelle at Easter Seals because they were the ones who nominated us. If it wasn't for them this would have never happened. Thank You Thank You!

I just have to register the van and go get a handicap thingy for Chase. Oh and CJ think our vini van(lol) is cool. She loves the TV and the sun shade

Chase's Birthday!

WOW! I cannot believe that my baby is 2 today!!!!! I can't believe how emotional I have been this week leading up to this day. I guess what is bothering me the most is the fact that you know a preemie usually catches by the age of two. Don't get me wrong I am fully aware that my son has issues and the denial phase is over for me but sometimes I think I just want it to be different. I love him so much and I just want him to experience all the fun stuff kids do. Even though he always appears to smiling and laughing.

He has been out of school for the last two days because he is not feeling 100%. Not sure if he is just trying to catch up on sleep. Plus he has a ton of teeth coming in as well. He is having a party at school tomorrow so I will head out later to make a cake for his party. We are going to do some pumpkin picking this weekend with them in bathing suits because it is just so hot still!

We are talking about possible coming home in Jan. so I will let everyone know the details when we figure it out.

Have a great weekend and enjoy your family!

Thea

Ohhh man

I just need to let this out!!!! badly! I really really dislike it when people don't listen to what I say regarding my children especially Chase. I feel like they think I have no idea what I am talking about and I am some idiot who just became a mother.

Listen people I was put on this planet to be a MOTHER apparently god wanted me to have this special needs child and thinks I can handle it. Just because you went to school to be a Dr or a nurse doesn't mean that you know MY child's needs. This is my job and I WILL NOT do it poorly!I am so tired of Dr's not listening to me from the start and nurses thinking that a degree makes them smarter than me. Well I may not have a degree but I am the CEO of the Chimenti household and walk one day in my shoes or any mothers shoes that has a special needs child and I bet your attitude changes real quick. And just for the record I am not saying this about every Dr that we have but I just wish they could spend the day here so they know what is going on at home not just the 15 mins that they see them.

Ahhhh ok I feel better now LOL. thanks for listening to me rant.

Chase and CJ update.

hello everybody!!!! I hope you are all doing well. Chase has had one of his best weeks yet. He is feeling really good and happier than ever. I hope it stays this way, the Dr. increased his seizure meds so hopefully that is doing it's job. And I am so excited to say his 2ND birthday with him next week. Poor child has had the craziest 2 years but maybe 2 will be his lucky number. Did I ever tell you how cute he is???? I don't know what is cuter his Mohawk, his blue and green eye, or his little square sponge bob teeth( i think I will go with his teeth you know how i feel about them).


Today I took Chloe for her 4 year old checkup and some shots and walked out with 5 prescriptions!!!What the hell! her left lung is really bad so they are trying to prevent her from pneumonia. I looked at the Dr. like hello she is my healthy kid this can't happen. So we will see what happens after we get the steroids, inhaler, and singular in her system. I sometime forget that Chloe was born 10 weeks early too! She has always been a fighter and so strong from day one. She is so sweet lately she always tells me that I am the best mom in the world and thanks me for everything. The other day she thanked me for always taking her to fun places, and cooking her good food and get this "thanks for taking me to Kohl's and CVS the other day" LOLOLOL.

Ahhh ok i have meeting at Chase's school with the lady in charge of events. Oh and No van yet for those of you who asked. Maybe next week.

LOVE YOU ALL!!

Chloe's Week!

Hello everyone, Sorry I have not posted I thought you guys were going to start sending me nasty emails because it is has been so long! Thank God Nicole had the baby this week she was so bored she was responding way to quick to these blogs lol. He is so cute!

OK so on Weds I went to pick the baby up from school and he was having a hard time breathing, Now that I think about it I maybe should have called 911 but instead I drove him to the hospital myself. Way to go Thea! I had to take Chloe with me because it was midday and everyone was at work. This never happened before because there was always someone to take her or I could get her out of the house before the ambulance would show up. WORST EXPERIENCE OF MY LIFE!! She did not do well with watching her brother tortured with blood work, IVs, breathing treatments and the suctioning machines. Oh god I would give anything for her to never see any of that again. She was yelling at them to get off of her brother because there was blood everywhere. The nurse cried and I kept trying to get her out of there but you could hear him in the hallways and she was not having it. At first I couldn't get a hold of Sean he was in a meeting but when he got there I said please just get her out of here and her response was " Are you going to cancel my birthday party"? So at this point I am just a mess, the baby is a mess, Chloe is still crying, and Sean is sitting there completely helpless because he didn't witness any of this. We assured her that her party was going to go on and sent her on her way.

They finally got him under control but his breathing just would not improve so you know that means ICU. All I am thinking is dear god please get me out of here I just get crazy when we have to stay you think I would be used to it but I just cannot do it. He is sooo bad in the hospital, he hates hates hates to be out of his environment and I don't blame him. He never sleeps and he is so bored. I spoke to the ICU Dr on the phone and begged her to get him out of there as soon as possible which she agreed that in the morning if he came off the oxygen we could go. At 3 am I take the oxygen off of him because super nurse was afraid but I know my child if you give him a inch he takes a yard, I knew if they left that oxygen on his would not try he would just let it do all the work. As soon as I took it off he looked at me and laughed and started breathing fully on his own! TOLD YOU SUPER NURSE!

So Thurs. morning the Dr comes in and says I can go!!! Yeah! I had to get home and get ready for my Mother in law and nephew to fly in. Flight was delayed an hour blah!

Friday was Cj's actual birthday and she went to school because she was also having school pictures that day. I went to the school for her classroom birthday party which was really cute. I love her teacher and so does she not as much as Owen(that's a whole blog in itself).

Sat was her birthday party at Jump and Slide, I think everyone had fun including the adults! There was so much for them to do and she had a great time.

She was so excited to see her grandma and cousin, her, party, the gifts, and her Choc late with chocolate cake. lol

My baby is turning 4

Well well well.. what a week! I am so exhausted it has just been crazy with dr. appts, new meds,the kids home from school. This weekend I have been preparing for Chloe's 4th birthday and her first real birthday party. She is so excited and has no idea that her grandma is flying in, her new Nintendo DS, her dollhouse, and the 4 shots she is getting on the 23rd LOL.

Sean and I really thought it was important to make her feel special this year, after all her life is not easy(even though she is spoiled) I think sometimes people forget about the siblings when you have a special needs child. I know she is very smart and aware but she still needs her time away from chase and by herself. It has been a real struggle with me to divide my time between them. I just pray that when she gets older she knows that I wasn't ignoring her I just needed to give Chase all the help he needed at the moment. She is a very helpful girl with a huge heart who knows way to much about medicines, machines and CP. Maybe she will be a doctor one day!

I have to admit that I feel like I missed out on a lot of her this year. I cannot beat myself up over it! It was something I had to do and hopefully when she is a mom she will understand it all!

WOW 4!!! I feel like I just held her for the first time in the NICU thinking she is so tiny and i hope she grows into that nose!lol. She did it is so cute now. OK hope everyone has a great week.

Back to Bethesda we go

Just a quick update, Chase was admitted back into the hospital last night with RSV and pneumonia. He will probably has to stay until Tues. He is still in good spirits and really tired because they are always poking at the poor thing.

OK I really need to go to bed, I am beyond exhausted. Sorry there is not a lot of info. I will be back on Tues.

Hospital days.

Well what a week it has been! We stayed in most of the weekend because it has been so hot here and taking the kids out in this heat is not really great for either of their lungs. On Tues Chase was supposed to go back to school but he woke up around 7 am looking ...lets say a little blue around the mouth. I gave him a couple treatments and we decided it was best for me to head to the hospital just to be safe.

Luckily I wasn't there very long they got in under control and I was released, his chest x ray looked good. So he is back in school and doing OK, we are going to look into a respiratory therapist to come to the school and do treatments to him there.

On a really good note I spoke to Michelle who has been helping us with the van and we are meeting the man tomorrow at 10 am. I am sooooo excited!!!! I can't believe this is happening to us. I lay in bed at night wondering how I am going to let this man know how truly grateful I am.

OK I really have to clean in case we get this hurricane! Hope everyone is doing well, I miss everyone in Jersey so much!!

My Birthday

So here it is 11:45 on the night of my birthday, in 15 minutes I will be closer to 30! I really thought a lot today this is the first time Ryan and I have ever been apart for our birthday, so weird. From what I hear she had a birthday cake that said Happy Birthday Thea and Ryan! My mom is too cute!

I did not really do much today except food shop and spend sometime with the kids. Chase is still recovering but has developed a nasty cough today of course today when our checkup at the Dr was yesterday!!! Hope it is gone by Tuesday. He ate a whole big pancake and I was just amazed at the fact that 3 weeks ago he could only eat pureed food and if it had any texture he would vomit. He is becoming such a big boy, it makes me sad! I tried a new sippy cup and he smacked me sooo i don't think he likes it( i think Chloe taught him that and if she didn't I will still blame her for corrupting my boy) Ohhh and he learned to shut the light switch off it scares the crap out of Chloe and when she screams he cracks up, nothing like torturing the princess. I guess that's what brothers are for.

Ok i think I am going to head to bed for 20 mins before he gets up again.LAST NIGHT HE GAVE ME A BIRTHDAY PRESENT TOO HE SLEPT ALLLLLLL NIGHT!!!!

Goodnight and thank you all for my birthday wishes!!! Love you

Oh my word!!!!!

You are never going to believe this!!!!!!! So I walk into Easter Seals(Chase's school) yesterday and some people were waiting for me...hmm what's going on????? They ask me to come in the back and they proceed to tell me that there is this very nice man in West Palm Beach that would like to GIVE us a 2005 Honda Minivan with 19,000 miles and a wheelchair lift for Chase For FREE did you hear me FREE!!!! I stood there completely in shock crying my eyes out for like a half an hour. Are you serious????????

A few weeks ago Sean tells me that the air conditioner is his car broke so he has been driving back and forth in the Fl heat with a shirt and tie on. So you can imagine the excitement inside of him when I tell him that he is getting my SUV and I am getting this new car. No more squeezing into my little beat up cavalier .

We have come across so many nice people since our Chase came home.We are so grateful for everything that has been given to us or done for us.

Chase's conditions

OK people here it is! People often ask me what is wrong with him, and will it change? Here are the answers.

He is a 28 week preemie born at 2lbs 15oz. He spent 21 days on life support and in his 9 week and 5 day hospital stay he suffered a collapsed lung, pneumonia, some damage to his right eye from too much oxygen, plenty of blood transfusions, a heart condition, brain damage, and apnea spells. When he left the NICU he was on a Apnea machine at home and 24 hour Oxygen.

Today he is better and a lot of things have cleared up. The heart condition resolved itself(thank god!), no more oxygen, He had the surgery on his right eye and now that is better( a little wacky at times but we are working on it).

Are big concerns at this moment are the Cerebral Palsy that he developed from the brain damage. That will never go away but with therapy it makes a huge difference (today we do 5 days of therapy). His lungs seem to give us the most problems of everything, he is still recovering from pneumonia as I write this. We do daily breathing treatments and lots of suctioning. We are unsure of where we stand in the future with the lungs, hopefully it will get better. I feel at this point his hearing is getting better and better by the day ( oh did i mention the hearing up top? ohhh whatever .. that too.)We returned the hearing aides months ago because they did not work he heard better with out them. His eye really does need to be fixed but right now that is not a concern of mine.

As of a few weeks ago we started the process on the wheelchair( nobody will ever tell you if your child will walk in the future! every child is different, BUT my kid has determination and I know one day he will walk, and I FIRMLY believe that). He wear orthotics on a daily basis and is starting to stand with his brace. Overall he is the happiest kid I know, growing more than he should be at his point(Thanks Sean!). Our only rough area is sleep it is still like we have a newborn around every few hours he is up. But one look at that smile and you forget about everything.

I will continue to update as much as I can. Thanks for reading

Chase John

April 2006 Sean and I talked about having another child possible someday and that we would probably really start trying in a few months,as some of you remember it took a little while for Chloe so we thought the same thing would happen. Little did we know!!!!!



I went for my annual checkup on April 28th to find out that I was pregnant!!! Whoa! I was so shocked,excited,nervous, and scared to death. What if I had another preterm baby? What if I went sooner than 30 weeks? What if this was a boy(boys never do as good as girls in the NICU)?What happens to Chloe if I have to go on bed rest? Am i going to have to leave my job that I loved? Was my husband going to freak the hell out when I told him?



Left the Dr. in freak out mood. Went straight to my Mothers house to tell her and my sisters. Sean came home about 3 hours later as he walked in I told him I'm Pregnant! His response was " I Know" the air conditioner keeps getting lower and lower. Gotta love him!!! We sat and talked about the worries and what could happen. At times I thought I was crazy for doing this again. But just like every other mother i forgot how painful the NICU was, and how hard it is to go home without your child every night. All i thought about was how healthy Chloe was and the pure joy she brought to all of our lives. As we sat on out couch thinking how lucky we were to get pregnant again after all these Dr's kept telling us we are not completely sure you will ever have kids.



So the days progressed and I had some ultrasounds and spoke with my Ob( who I loved and my family hated) about the upcoming months. She thought it would be best for me to see a perinatologist(Dr. Patel) and to take all precautions just in case i was earlier than 30 weeks. The days went on and i saw Dr. Patel weekly, the OB for steroid shots and I had a cerclage put in at 20 weeks. 21 weeks Sean and I went to Patel's office to confirm we were in fact having a boy! Right away the talk came about how boys don't do as well and to prepare for that. HOW?? I DON'T KNOW.


We went to NJ for our last trip before the baby came knowing it would be a while before I saw my family, friends, nephews and god children. Returned to Florida to loose my job and be put on bed rest a week later. I really did try the bed rest thing as long as I could but it was very hard with a 1 year old running around. She really did do well with all of it though. We was just excited to be a big sister.


On October 8th i woke up in a lot of pain very uncomfortable I stayed in bed and cried because I knew it was time but what was i going to do I was only 28 weeks!!!!!! I walked over to my mother's to ask her to watch Chloe and explain what was going on. I called my ob and of course it is a holiday weekend and she is on vacation! Just wonderful! ok than I will call Dr. Patel.....nope on vacation! I arrive at West Boca Medical at 11am for them to confirm I am in labor. Sean and I said nothing to each other we just knew what we were in store for.

They tried to stop the labor but it was never going to happen it simply was just time( i will NEVER explain the whole labor story we would be here for days) They wheeled me into OR at 12:00 am and I delivered a 2lb 15oz baby boy at 12:07 am. All i know is that Sean's gave it all way and I just knew something wasn't right, he couldn't look me in the eye. He told me everything was GOING to be ok. At that moment my life changed and will never be the same I have this amazing new life but what does the future hold??????????

A letter from the Chimenti's

OK I swore I was going to do this for so long! Here it goes... I must let everyone know from the start that I am terrible at writing but i feel this will be the easiest way to update everyone on the Chase (and Chloe James too).

All I ever hear is my phone ringing, AOL saying you have mail and people complaining that my mailbox is full. It is so hard to explain things over and over(especially the hard days) but I know how much everyone cares so I try my best.

Sean and I could have never come this far without the help of our parents, siblings,friends,coworkers,teachers, Doctors and his therapists. This has been such a up and down 22 months. We never thought this would happen to us but we do realize that this situation could be much worse so we are extremely grateful for our wonderful children.

I will try to update as much as I can just give me time to learn all this stuff. Thanks for looking and leave me comments on how I am doing.

We love you all

Thea