Has me WRAPPED!

About a month ago, I wrote how Tyler had given me a couple hugs during a bad day I was having. Well, it gets better!

I have a part time job at Bath and Body Works. I have for the last 8.5 years. I just can’t break away from there. Well last night I had to work as they were changing the floor around. When I work a Sunday night, I usually arrive home well after Tyler has been asleep. Last night I was fortunate enough to come home early and he was still awake in his bed. I promised when I left I would give him a kiss when I came home. Well, I kept my end of the bargain up. I went in, saw his smiling little face and promptly gave him a kiss on the cheek. I look down and he is signing for me to pick him up. I told him it wasn’t time and that he had to go night-nights (he started summer school this morning and I knew it was late). I then gave him another kiss on the cheek only to have him sign again he wanted me to pick him up, this time he was starting to sit up. So I did as he asked, as we are supposed to do that so he learns his signs, and what does he do…….. gives me a BIG HUG, then leans over and signed “more” in the direction of his bed. I laid him down and he was asleep within 5 minutes.

He has me right where he wants me…..and I love being there!!!!!!

Prayers Have Been Answered

After 5 long months, Tony received the call he has been waiting to hear “we would like to extend you an offer for employment!” He is thrilled. He starts back into the working world on July 13th. The drive is a bit longer than what he was doing before, but like we said its a job. And his hours should be 7 – 3:30 so he will miss the traffic on both directions AND be home in time for supper with Tyler. It is so nice to have my happy, joyful husband back. I know this time has been extremely frustrating and I do not blame him one bit for feeling the way he has. So now he has 3 weeks to enjoy being home, enjoy playing with Tyler, and just relax. Thank you everyone for sending thoughts and prayers that he would find something. Someone was certainly listening

My Preschool Graduate

It is with mixed emotions that I post this blog today. Yesterday my baby graduated preschool! 2.5 years ago we were scared to death putting him in the public school. We had so many fears: would he be able to nap, will they know what he wants, will children play with him, will adults accept him for who he is, will he be snuggled if he cries, will he learn things like communication and motor skills, will be be accepted? Well we can whole heartidly answer “YES” to all of those questions. We couldn’t have been more fortunate to have found this teacher and this school system. Granted, we have had a number of disagreements but all in all, it has been a wonderful experience.

And now I sit here facing the same anxiety for the upcoming school year. Tyler will be secluded as mainstream Kindergarten just isn’t what he needs or will excel in. So now my fears are, will he realize he is alone, will he have the opportunity to play with typical peers, will he continue to grow and learn, will he still be accepted for who he is, will he resent us for not mixing him in with typical kids, is this the right program or should we be exploring other options? These are all things that I will have to stew over until he starts this program and we see how he handles it. Until then, I am glowing in the fact that my baby graduated preschool. My baby who wasn’t supposed to talk, walk, eat, roll over, survive really, has a diploma hanging on his wall. My baby has proved so many people wrong and continues to do so. My baby, walked to “Pomp and Circumstance” to receive his diploma. My baby is heading into Kindergarten. Where in the world has time gone?? I couldn’t be any more proud than I am today!

Before heading to school

Performance

Marching to "Pomp and Circumstance"

Receiving his diploma

Proud Mumma

Total Ignorance

As mentioned, Tyler was started on an anti-seizure medicine, Trileptal, 2 weeks ago. After the first week we noticed a definite interruption of his sleep during the night and also some issues with going to the bathroom. I read all the side effects, including on line where there were personal testimonies and these 2 are side effects experienced by many people on this medication. So I called the doctor on Monday. His nurse was out but asked for a full detailed message, of which I gave her.

Yesterday I receive the return phone call from the nurse. I am fully expecting to be sent in for blood work as this medication can lower sodium levels. She says to me that she wasn’t familiar with either the interrupted sleep or the digestive issues being side effects but she did say that wasn’t to say they weren’t. She continues to say it sounded more like an intestinal bug and that we should call the pediatrician rather than the neurologist. Hope your all seated as this is the best part of the conversation:

Nurse: ” As for the interrupted sleep, you should keep him on his normal routine no naps and lots of exercise.”

Me: “Well naps are part of his routine. He doesn’t take them daily but he does take them when he is tired.”

Nurse: “What 5 year old takes a nap? That is only asking for behavioral issues. Have him ride his bike or run around, with a buddy of course to make sure he doesn’t get hurt.”

ME: “If I could have him do those things I would but you see he doesn’t walk, let alone run so that will make it difficult.”

Nurse: “Oh. Call your pediatrician for the virus and I will ask the on call doctor if she has heard of these 2 things being side effects. If she thinks differently, I will call you but please call back with the recommendation from the pediatrician.”

ME: “Sure” with a COMPLETE hint of sarcasm in my voice.

Ok, so this is the first time I have spoken with the nurse, since we just switched to this neurologist in May. BUT, shouldn’t she scan his chart quickly before calling back?? She claimed to have had it in front of her and that she was reading the doctors note. Well if she read the first paragraph of the doctor’s note, she would have had his FULL description of his medical history including the fact that he is non verbal, non ambulatory, legally blind, etc etc.

I just can’t believe that was the converstation I had yesterday. I still can’t wrap my mind around this. So in 3 months, I have encountered 2 bothersome situations from one of the best hospitals in the country. Not making me very happy AT ALL!

Last night was no different with Tyler tossing and turning around 4AM. So this morning as he happily ate his english muffin, I said he needed to ride his bike more today so he along with Mumma could get a full nights sleep…too which he laughed and gave me a big smile that always melts my heart! If only his smile could make everything right!

The Perfect Therapy

DesiComments.com | Hugs | Forward this Picture

I couldn’t have put this ANY better! Yesterday I was not having a good day. I woke up grouchy which I TOTALLY hate doing. And a couple times yesterday while carrying Tyler and once when I was snuggling with him, he gave me a hug. He really squeezed me! It was like he knew. So I of course gave him a hug back which in turn lead to another hug. He likes deep pressure so hugs are perfect therapy for him…and a sad Mumma

Kelly’s Kreations

Photography has been a huge passion of mine since around the age of 12. I have always liked my photographs but that was just me. I brought some pictures of mine to work to hang in my cube. My co-worker was floored. She asked if she could even buy one. I was then floored. So with her support, I put together some greeting cards with pictures of flowers from my garden. You can see these at my former candy only site http://kellyskreations.wordpress.com

Thank you for visiting!

Shameless Plug

I recently joined my friend’s Longaberger Team. I am hoping to be successful enough with this that I can achieve my goal of staying home with Tyler. I know my feelings are no different than a lot of working parents, but this is something that I have wanted to do since he was born. I want to be there with him helping him as much as I can!

If you are not familiar with Longaberger, they are a family company that started off selling hand made baskets. Today they sell pottery, wrought iron, linens, and other products in addition to their hand made baskets. And the best news is, its MADE IN AMERICA!! How many companies can still say that. So if you or your family is interested, I have a site where you can order products. I encourage you to look at the Factory Store and Homestead Store links on the left hand side. I discovered this today and there are TON of items at very great prices.  Here is the link:

http://www.longaberger.com/kellybrunetti

Happy Shopping! Thanks for looking and please feel free to pass it along to anyone!

And I am back…..

I didn’t realize it has been so long since I have sat down to type. Our world has been filled with ups and downs and I am not sure when, if at all, it will stop.

Started with a team meeting for Tyler to discuss his summer program.This has ALWAYS been a sore spot for me as the summer program seems like such a waste of time to me. The teachers show ZERO enthusiasm, its hot, the AC isn’t on, demands aren’t placed on the kids. Its terrible. So we went and I was geared up to fight to get him to attend 5 days. The team praised him and how well he is cooperating now being on the Resperidone. His preschool teacher looked at the team chair and said that if Tyler didn’t attend 4 days a week he would have significant set backs. So it was decided that he will be going 4 days a week, 2-2.5 hours each day WITH an hour of music therapy every Monday. We couldn’t have been happier. I think its going to be a great transition for him and am really looking forward to it. BIG

Next we have had a slew of interviews for Tony. Some seeming so promising. And nothing has panned out. So we sit and wait to hear back from other places that he has interviewed with and he continues to apply. I keep hearing things are turning around but the poor thing is really getting down on himself. These things definitely take a toll on person but I think more so men than women. Continue to say prayers!!

Now we come to last week. Started off  on Thursday with a fantastic trip to the zoo with Tyler’s preschool class. Did we ever have fun. They are all so cute and it is so much fun to watch the expressions on theil little faces when they look at the animals. Of course my heart ached wanting Tyler to see them, but he was content to be outside, surround by his friends and fresh air.

Friday we went to see a new neurologist at Children’s Hospital. We “graduated” from our original neuro because Tyler isn’t considered an infant any longer. We went in with an open mind to meet this new doctor but also with some questions regarding these “behaviors” that we thought were seizures. The doctor was very nice. Had already read through Tyler’s chart so we didn’t have to repeat his whole life story again. He played with Tyler a bit and then asked us to describe the events we were concerned about. He listens and says between what we are saying and what the EEG, from February showed, that he has a condiotion known as partial seizures as they are only occuring on the right side of his brain, the more damaged side. We asked why we were told differently in February, because if you recall the neuro at that time said it was strictly behavioral, and he said he was surprised by that. So he said it was time to talk medication. UGH..what I have dreaded all along. But we need to do something to prevent any major seizures from happening. So he gave us a prescription for Trileptal. It’s been on the market for quite a while and also is used to help with behavioral issues. So we are hoping we might be able to take him off the Resperidone but we don’t want to jump the gun yet. So we gave him his first dose of medicine last night and we are keeping our fingers crossed. There thankfully aren’t too many side effects with this but there are a couple that we will need to watch for. I never asked why these are coming on so “late” in his life, considering he didn’t start having them until this past December, but I was in shock that the other doctor gave us false information. I couldn’t believe that this happened. This is a world renouned hospital. How could 2 doctors from the same hospital, in the same department, on the same floor, read an EEG so differently. And there really wasn’t any way to misread the EEG. Tony and I read it and we have ZERO back ground on seizures. There was no denying what was typed on the screen. But there is no reason on dwelling on the why’s…we have an answer and onward we go.

We ended the Memorial Day weekend surround by friends. We hosted a cookout on Saturday, we went over our neighbors house for a bit on Sunday, and then attended the local parade on Monday. The weather was perfect and it was great just being together. I couldn’t have asked for a more perfect weekend that what we had. If only every day could be as happy and carefree. Here are a couple pictures:

 

 

 

 

Please keep the positive thoughts and prayers coming our way that not only will Tony find a job soon but that Tyler will not suffer any side effects from this new medicine and that it will help him get the seizures under control.

Week of Ups and Downs

What a week we have just been through at the Brunetti week!

The week started so nicely with Easter. We had such a lovely day with our family.

Tuesday was Tony’s birthday. I had to take Tyler to a GI check up that went quite nicely. She gave him the green light to get off the Prevacid. This made us happy as he does not like Tony in the mornings when he has to take it. The day was capped off with me cooking Tony’s new favorite dinner Parmesan Crusted Chicken Tenders and Yukon Gold Potatoes. A girlfriend of mine made a FABULOUS coconut cake as a surprise. Tony had a great day and we were gearing up for Kindergarten Orientation the next day.

Wednesday morning, Tony woke up at 5:30 to take a shower. He screamed at me to get into Tyler’s room. Tyler was face down on his pillow, which is normal, but he was breathing very strangely, had saliva and blood coming from his mouth, looked like he was trying to throw up, and he was as limp as could be. I insisted Tony call 911 as I knew this was a seizure but he wouldn’t do it. He claimed he sounded congested. I asked him to call again as I was now cradling my sweet baby and he wouldn’t do it. This episode lasted all of 2 minutes, if that, and then Tyler was sleeping like a baby which I know you are supposed to let them do that. So we let him sleep and I went to orientation extremely upset that we can’t be on the same page when it comes to Tyler.

Orientation was ok. A lot of it I knew already since Tyler is already at the school. I went with my neighbor, who’s son is in Tyler’s class. When we went to pick him up, I lost it. I started to cry. These new moms must have thought I was nuts. But the key there is NEW moms. For the last 3 years we have been in the safe haven of preschool. Many of the moms have been there 2 years with us. The class size has been small and the kids are ok with Tyler. Well since prescshool is an option in our town and Kindergarten is not, we have about 70 new children coming to school. That’s 70 more parents to get looks from. That’s 70 more parents that may or may not talk to their children about Tyler and why he is different. That is 70 more children who may or may not have been exposed to special needs kids.  But what really hit me is he is starting Kindergarten in the fall. He is growing up so quickly. He has come so far but when I looked around and listened to all that would be happening during this milestone year, I realized that he wouldnt’ truly be one of those kids. It was another reality slap for sure and after the morning we had, I just couldn’t hold myself together. Thank goodness I was able to be in that safe haven of preschool to compose myself. I am not sure I am ready for this.

Tyler ended up being perfectly fine the rest of Wednesday. I had taken the day off as a vacaiton day and I was able to spend a lot of time outside with him as the weather was perfect. We went on the swing, played with bubbles, played with a ball.  It was wonderful. 

Thursday morning came without any issues with Tyler. I kept him in our bed as I wanted to monitor every move he made during the night. I am nuts I know. I just needed that comfort. Tony and I headed to school for an IEP meeting to discuss summer programming. I was ready to  yell, fight,s cream, whatever I needed to do to ensure they put him in 5 days. The past 2 summers he has only attended 3 days a week for 2.5 hours which isn’t enough. So we sit down, the team starts raving about how well he is doing now that he is on the new medication. They love how he is willing to participate, play with children, eat and drink. They, and us, were thrilled. So it came time to decide the days and the team said if he wasn’t there for 4 days that he would suffer significant regression. So it was decided that he will go 4 days. We were thrilled. AND, AND he will be getting music therapy every Monday during the summer for 1 hour. Why his other meeting couldn’t go this smoothly, I am not sure. But we were so happy when we left there!

Friday and Saturday were pretty uneventful. We played outside and Tyler was great. We had lots of fun together.

Sunday, yesterday, we needed to be up bright and early for our March of Dimes walk. The weather was very chilly so we decided to not take Tyler since he has been so sick most of this year, we didn’t want him out in that possibly coming down with something else. Well he wasn’t himself in the morning. He wouldn’t eat breakfast. He was miserable. He didn’t even want to walk to the car. So we drop him off with my Dad and go to the walk. We are 3/4 of the way through and my Dad calls on the cell that Tyler had another one of those episodes where he was listless, and saliva coming out of his mouth and then all he wanted to do was sleep. And that kid slept most of the day away.

Now one of the things we are unsure about is if stopping the Prevacid had anything to do with him throwing up yesterday and not wanting to eat. That prevents reflux. Tuesday was his last dose. This happened to us the week he had the flu. We had stopped it then 3 days later he threw up then was fine. Which today, he is PERFECT as we gave him the Prevacid again and he ate like a champ. So looks like we may have to stay on this medicine.

I am going to call the neurosurgeon to see what he may recommend we do for these episodes since the neurologist told us they definitely aren’t seizures but rather behavioral events. Stay tuned!!

Easter

We had a wonderful day yesterday surround by family. Tony decided he would like to host Easter this year. First it started with just my parents and brother coming over. Then we invited Tony’s Dad. Then we invited his uncles. When all was said and done, we had 13 adults and 2 children. While the weather could have been warmer (it was only in the 30’s yesterday) we couldn’t have asked for a better day. We had appetizers and drinks abound. All of the china that Tony and I received for our wedding, 12 place settings, were used for the first time in the 7.5 years we have had them. We had a delicious ham dinner. We celebrated my father and Tony’s birthdays. But most of all, we had lots of love. While Tyler doesn’t understand the Easter Bunny or why there were items in a basket for him, he knows he was surrounded by love. And that is the most important take away for him from yesterday. I think we might have started a tradition now as I think we will host Easter going forward.

Here are some pictures from our fun day. I hope each of you had just as nice of a day as we did.