Tuesday, September 19, 2017

So proud of AJ!

For the last two years AJ has been dealing with Uveitis in his left eye. We were shocked to find out at an appointment for some eye redness that he couldn't see out of that eye. He was immediately sent to a pediatric opthamologist where he was put on steroid eye drops (among others) to get the inflammation under control. His vision was 20/800. After weeks of eye drops every hour the inflammation was improving very slowly.

Many tests were run to figure out the underlying cause of the inflammation. Everything came back fine. Just like his mama, AJ seemed to be the Zebra.

After months of being on steroid drops a systemic medication was prescribed by Rheumatology. Methotrexate is typically a cancer drug but in small doses can treat inflammation. So I had to learn to give my 6 year old weekly subq shots. It was helping but not enough. We were able to taper down the steroid drops but could not get off of them totally.

Humira was then prescribed. It was scary having such a "heavy duty" medication ordered on top of the MTX but we were out of options.

Finally after months of shots and drops and sometimes bi-weekly eye appointments AJ was able to be totally off the steroid drops.

Finally in September on 2016 AJ was officailly in remission. No active inflammation.

Since then AJ has had multiple laser procedures, 1 cataract surgery and another to clear the cornea of calcification. We've made a trip to Boston to see one of the best Uveitis doctors in the world.

Treatment continues. That includes wearing a contact lens (the lens in his eye had to be removed with the cataract and because of the possibility of future inflammation an implantable lens was not recommended), a new bi-focal and patching his "good" eye to strengthen the left. He's still at an age where his left eye can regain some vision. His fantastic eye doctor was hopeful that he would be able to get useful vision back. He figured it would probably end up around 20/100. Well, AJ has been patching for months. He's up to 6 hours a day and at his last visit was at 20/60! An improvement from the previous appointment 10 weeks earlier where it was 20/80.

He's come such a long way and even his doctors are surprised at how far he's come. And all the while barely a complaint. He goes with the flow and does what he needs to do - 6 shots a month, hours and hours of patching and wearing his protective glasses. He can even put in his own contact now!

AJ does all of his patching at home. When he wakes up he puts in his contact in so he can get an hor or two done before school, so he can get all of his hours done outside of school.

Last night he had some reading homework. He was able to read the whole book (with some small print I might add!) with his patch on! This is HUGE! In the beginning he could barely see the tv with it on. Now he was reading. The happy tears were flowing for this mama!

I can't begin to express how proud I am of him. He's taken all of this in stride and usually with a smile on his face. All of his doctors love seeing him and are just as proud of him as we are.

His next appointment is in December. If there's been even more improvement we expect to continue patching to see just how good we can get the vision.

Wednesday, May 11, 2016

Five years

I recently got a new cell phone. I've been trying to get it organized and synced. I've been trying to remember what apps I had on my old phone that I need to download to the new one. I've purposely left one off the list. Normally I love seeing what Timehop brings up from years past but during May it's so hard. I don't need an app to remind me of everything that happened 5 years ago. I know. My body knows. My brain knows. Even if it just starts in my subconscious I eventually realize that the funk that has set in is because of where we are in the month.

Last night we had a meeting. Usually being there helps me. I enjoy helping new people and I'm ok hearing their stories. Last night was hard. Really hard. The cloud over me continued today. Its the worst waking up with that feeling. Today is the day we had our 20 week ultrasound with Ryan. It's not something I have marked on a calendar anywhere but without fail every year I remember. We were so excited for that scan. We'd had a bunch up to that point because of how rough the pregnancy was. This was a peek after another hospitalization and MRI. He was always so active so I knew he was ok but getting to see him bouncing on the screen was always my favorite reassurance that whatever was going on with me wasn't effecting him. We had no idea that 10 short days later we'd get another look at him but in a very different way.

Five years is a long time away from your child. None of his birthdays have been easy but this one seems a little harder. I see what personalities AJ and Cameron have and how different they are and wonder where he would fit in. Would he have loved preschool as much as his big brother? Would he have been the class clown? Would he be so excited to get to ride the bus to school in September? Would he be excited for our trip this summer? Would he love trains as much as his brothers? So many questions that will go unanswered. Forever.

Five years already seems like forever.

I miss you with everything I have. That will never change. I love you sweet boy. Forever and a day.

Friday, July 17, 2015


Last year Pop mentioned for his 80th birthday he wanted the family to all come together and stay at his house like we had done 10 years prior when we went on a family cruise. We all piled in the living room with air mattresses from wall to wall and pretty much spent most of the night goofing off and not sleeping. It was one of the best nights we'd had all together. So we all got planning. With everyone's busy schedules we figured out that June would work (even though Pop's birthday was in March). We booked our plane tickets December 31 last year.

Fast forward to Mother's Day weekend. I got a call that took the breath right out of me. It was my dad and he was upset. "Pop's got brain cancer". The information took a minute to sink in. He explained what he knew at that point (not much). After more testing and more conversations with Pop and Grandma we found out that it was lung cancer. Stage 4 that had spread to his brain. The diagnosis came after pain and twitching in his arm. He was literally on the golf course one day and then sitting in a hospital bed with a chest tube the next. As soon as the diagnosis came our family banded together. We started a group facebook message so we could all keep up with the load of information coming from Florida. My Aunt Ree flew down to be with my grandparents. She was our line of communication. Once we knew that there was a treatment plan in place plans came together so Grandma and Pop didn't have to be alone. My sister, Aunt, cousin and dad all went to Florida to help get Pop to and from treatments and doctor appointments. They relayed test results and asked questions that we had from here at home. The party was still planned and Pop said he still wanted it to go ahead, even though he had finished 15 radiation treatments and 1 round of chemo.

I think we were all a little shocked when we got to Florida. Pop would talk a good game on the phone and Skype but to see him in person was another story. The great-grandkids were so excited to play with Pop. My niece and nephew were just at his house last September and he was throwing them around the pool. This time he didn't even come outside. One day he did sit inside and watched through the glass doors. The kids didn't understand why Pop couldn't come play in the pool with them.
Saturday morning we arranged to have a photographer come to the house to take family photos. We had so much fun. We laughed a lot. From funny faces to jokes about being put on the end (easy to cut out, ha!) we all had a great time. For me it was a highlight of the weekend. Later that evening was Pop's birthday dinner. The family as well as some more cousins went to Kally K's. Pop wasn't feeling well and was very hot. The restaurant was nice enough to get a fan for the room to keep Pop more comfortable. We ate and laughed, sang happy birthday and had cake and even sang a fun song composed of "Pop-isms". We all went back to the house to spend some more time with each other. Some of us went swimming, some sat with Pop inside the den. It was a great night.
The next morning I received an email from the photographer. She had worked Saturday to get our pictures edited and send to us so we could all see them together, as a family. After breakfast the kids wanted to go in the pool. Nick took them in. My family was going to leave to head to my in-laws house around 1pm. Once the family was all together I hooked up the computer to the tv so we could all see the pictures together on the big screen. After about a minute of watching pictured Nick had me come get Cameron. He was getting ready for a nap. Nick stayed in the pool with AJ, Cole and Brynn. At some point Elijah joined them. Cameron was sitting wrapped in a towel watching the pictures with some of us when we heard screaming. I didn't recognize the voice. Then we heard my Aunt scream and come running "Elijah is having a seizure". I moved Cameron off of my lap and went running with pretty much everyone in the room. I realized as I was heading towards the living room that it was Nick who was screaming. I've never, ever heard a scream like that from him, not even on the night we lost Ryan.
As I got outside Elijah was being pulled out of the pool. He was at the end of his seizure. My sister was already by his side and rolled him over to get some water out of his mouth. I hadn't realized it at first but he had the seizure while in the pool and was under water. I was comforting Nick for a minute, when I turned back around my sister was doing chest compressions. I couldn't believe what I was seeing. I was trying to help however I could.. I got a towel to put under Elijah's head. He was bleeding but we didn't know where it was coming from. Every time Lauren did a compression more fluid came out. My Uncle was at Elijah's head and was giving him breaths. I will never forget that sight. There was something about his actions that will always stick with me. He was trying so hard. He was so focused on saving his son. He didn't think twice that there was vomit or blood or fluid coming from Elijah. He was trying to save his son's life. We continued with cpr and could finally hear sirens outside. There was finally a pulse and Elijah was trying to breathe. We were pounding on him pretty hard between compressions and hitting his back to try to get the water out. When he was breathing again it sounded like he was moaning. You could tell that it was taking a lot of effort for him and you could still hear the fluid in his lungs.
The paramedics came and got him on the stretcher and took him to the ambulance to work on him. They had to intubate him. They left for the hospital with my Aunt and Uncle following behind.
We got the call about an hour later. Elijah coded again in the ambulance on the way to the hospital and they were never able to get him back.
The family all headed to the hospital. I stayed behind with Nick and the kids to be with Grandma and Pop.
Through everything that's happened I cant be more proud of my family. Everyone has come together to help with Pop. Whether it's an idea or suggestion or a question for the doctor. We're many people all working toward a common goal. Many families would fall apart with dealing with the situation but it's been just the opposite for us. We've grown closer. And even on that Sunday as we tried to save Elijah -- everyone did their part, some were outside on the pool deck, some were out front waiting to flag down the ambulance, some were with the little kids trying to shield them from all the confusion and some were with Pop. Everyone did a job and no one had to tell or ask them to be doing something.
We all came together this last weekend at Elijah's wake and burial. We all leaned on each other. It was sad to have to say goodbye to Elijah, especially at such a young age and under the circumstances but I honestly feel that he's at peace. I feel in my heart of hearts that he wanted to be the one waiting for Pop in heaven. Make no mistake, I don't think Elijah got in the pool knowing something was going to happen and none of us know what the future holds for Pop but one thing I do know is that when they meet again that's going to be one hell of a reunion (and hug!)

Tuesday, July 7, 2015

Help Means Help!!! ~ By Nick Ippolito

I will never forget the sound of my voice, screaming for help!  It was the most blood curdling, ear splitting screech of a scream I have ever voiced.  And no one heard me, or no one believed me.

On Sunday, June 28, 2015, my cousin Elijah drowned in my grandparent's pool in Florida.  He was a man in his young twenties, and he was just floating in the pool, swaying side to side as he drifted to the bottom of the deep end.  We were the only one's in the pool, along with my son, niece, and nephew, none more than 5 yrs of age.  I acted as quick as I could, yelled to my son and nephew to go get help.  They thought I was joking and just laughed.  It's not their fault, they're five.

I dove down and got hold of Elijah, and struggled mightily to get him to the surface.  Make no mistake, a body that has ingested all that water is not light.  It took everything I had to get him to the surface and keep his head above water.  He was in the midst of a seizure as I held him, trying to swim us both from the deep end to a part of the pool where I could stand and get him out of the water.  I screamed for help, over and over and over again.  No one came, no one heard me, or believed me.

I kept screaming and screaming, HELP, HELP, HELP, and finally my Aunt saw me flailing my arms through the glass sliding doors and realized that I was in need of help.  The rest of the family finally came and helped me get Elijah out of the water and start life saving measures.  God bless my sister in law (who is an RN), my brother in law, my wife and Elijah's father.  They did CPR, they extruded most of the fluid Elijah swallowed and got a pulse back before the medics arrived.  They did all they could, but Elijah did not make it. 

We lost him that day and all that keeps going through my head is how did no one hear me yell for help?  Or why did people not believe that my yell was for real?  Could I have done something differently, said a different word, or who knows what?  Who in their right mind would yell for help and not mean it?  Just as our society understands that NO MEANS NO, we need to start the grassroots campaign towards HELP MEANS HELP.

Please do your part and pass along this message.  Make sure that you teach your kids that if someone is yelling for help, that they should get it.  Adults - don't assume people are joking, react and assist, or at least get someone else who can if you are unable.  And NEVER EVER joke around with the use of this word; you never know, it could cost you your life.  I hope that is not what happened to my cousin, but I can't help but wonder if someone would have reacted sooner or heard me sooner, would we have been able to save him and still have him with us.

A GoFundMe page has been set up to help Elijah's parents with funeral expenses. If you'd like to make a contribution please click here. Thanks.

Friday, March 27, 2015

Goodbye tonsils

Wednesday AJ had his tonsils out. We were all nervous, although I'm sure I was probably more than AJ. We arrived at the surgery center and AJ was excited to show Nick the small table and chairs that are tucked in a corner of the waiting room. He remembered them from the tour on Monday.

Before we knew it his name was called and we were heading back into pre-op. They did all of AJ's vitals and then brought us back to our curtain area to change into his gown and wait for his turn. When we took the tour the nurse showed us all of the curtain areas for kids. They have four of them. One had trains, one had trucks, one had animals and one had ladybugs. AJ was excited going from room to room deciding which one he'd hope to have.

We were escorted to this room:
Talk about a sign -- I asked and we got it. This is the only ladybug room in the pre-op area.

I had asked for a sign and boy did I get it. I smiled and looked at Nick and was able to feel a bit more at ease.

We were in that area for about an hour. The anesthesiologist came in, the nurse anesthetist, AJ's doc and a few other nurses all introducing themselves and going over the procedure. 
All ready to go!
AJ was dressed and ready to go. Didn't he look cute! We did have some down time to go for a ride while we waited and in between visitors. 
Playing a little while we waited to see the Doctors

Around 9:50 it was time to go. AJ was wheeled to the OR (like he was driving a race car!) and we had to go wait in the waiting room. I was able to hold it together until he was out of sight and then the tears came. What a helpless feeling. I knew he was in good hands but it was hard to watch him go.

About an hour later the doctor came out and told us he did great. Everything went as planned and we could see him in recovery.

All done, giving us a thumbs up.
When we got there he was starting to wake up and was very agitated. Once he calmed down he was able to sleep for a bit. He woke up much happier and was able to relax and watch a movie and have a popsicle. We had to stay in recovery for three hours (standard for tonsil removal).

Everyone at the surgery center was wonderful. They really made it a good experience not only for AJ but for us as well.

We're all glad it's done. Recovery has been a little tough -- nights especially, but he's getting there. Hopefully by next week he'll be back to his old self. 

Monday, March 23, 2015

An emotionally heavy day

Today was jam packed. We were up and going early. On the agenda was kindergarten registration for AJ.
I needed to bring his birth certificate with me so I went and grabbbed it from the lock box where we keep all of our most important things. It was right under Ryan's memory box. I took a quick peek at Ryan's picture. It feels strange to me to go in that box and not look at something of his.
Registration was surreal. It was the first time I was in the school. It was lunch time and the halls were filled with children's happy voices. I tried to picture AJ eating his lunch in the cafeteria with new friends. I can't believe my baby, the one who first made me a mom, is old enough to go to school.
Later on in the day we went for a tour of the surgery center where AJ will have his tonsils out on Wednesday. He did great. He was chatting up the nurse. We got to see all of the places we'll be and that was reassuring. I'm not gonna lie, I can feel my anxiety building the closer we get to Wednesday. I know he'll be fine but the thought of having to let him go, even for just the little while, sends me close to a panic.
All of the emotions today on top of the busy schedule has left me exhausted. My mind has been on Ryan a lot. I realized that kindergarten was another milestone that he wasn't going to have. He's not going to make new friends, ride the bus or trade snacks. What I wouldn't give for him to have that.
Missing you sweet boy. We could use a little reassurance on Wednesday - a little sign would mean the world.
I love you so, so much. Forever and a day.

Tuesday, March 10, 2015

Conversations with AJ

I've mentioned before how most of AJ's questions about Ryan come up while we're driving in the car. I guess my mind isn't the only one that wanders at that time. Now that he's older he understands more and seems to connect the dots more. They learned all about heart health in school. He told me one day that Ryan died because his heart stopped beating.

The other day in the car he brought that up again. He told me about how Nick went and cleared the snow from Ryan's stone. (I should really say he dug out because there was more than a foot of snow covering everything) AJ told me that Nick also cleared some other stones. He didn't know their names. I told him that was Hayden and Ethan.

Me: Do you know who Hayden's mom is?
AJ: No.
Me: It's Stephanie. And do you know who Ethan's mom is?
AJ: No.
Me: It's JennRose. That's how we met and why we're friends.
AJ: Did their hearts stop too?
Me: Yes they did. They were born too early just like Ryan. (I can almost see the wheels turning and him processing the information. I figured this was a good time to explain what my meetings were.)
Me: My meetings are for other mommies and daddies whose babies have died too. We try to help them.
AJ: and grandma and grandpa's too?
Me: Yes, we've had some grandma and grandpa's come too.
AJ: And kids?
Me: No, there are other groups for kids. We usually only have grown-ups.
AJ: Do you think we can bring the cozy coupe down tomorrow?

And just like that he got the info he needed and moved on. The questions usually come out of the blue right after talking about something completely unrelated and as you can see, end the same way.

Some days it almost feels like an ambush. It's not always easy to talk about when you're not prepared. Nick is much better at talking about it and being honest with AJ but still in a way that's very easy for him to understand. Me -- I'm working on it.

I'm glad that AJ feels comfortable enough to ask questions and talk about his brother. He thinks about him quite a bit and really, that's all I can ask for. I was always so afraid he wouldn't talk about him or include him.

I'm so lucky to have such great kids.