Tuesday, May 31, 2011

Long Weekend

What a glorious weekend we had. Not too much rain, got some things accomplished, and spent time with friends.

Tomorrow is blood work day, so I'll be back to being on pins & needles.

Ready to ride the rails with Thomas The Tank Engine.

 Looking out for "alligators" since it was so swampy.
 ready to party at winking lizard luau.
 My boys.
 Helping Uncle Sam get the fire goin' for smores.
Bounce & Slide

Nonny & Grandpa's 30th Anniversary
The best cupcakes ever. Salty Caramel is my fave :)
Some friends didn't have as good a weekend as we did. Our friend, Bob, lost his mom and my friend, Mary's mom is in the hospital. If you have a good thought to spare for them, please do. Their moms are a very important part of their lives and this is a difficult time for both of them. It is hard to see your friends hurting when there isn't much you can do.

Thursday, May 26, 2011

A Kid Is A Kid Is A Kid....

So this blog is usually about my kids, but today I'm going to talk about three other kids:

Monika Martic, Alex Skrabski & Kayla McCauley--They are high school kids doing college course work and work study through Ohio College Tech Prep.

I've never met these kids, but my husband is mentoring them through his work, Avery Dennison. He has done this for several years and this year these hardworking kids have managed to win the regional & state competetion for the mobile app they designed and can now move on to 2011 SkillsUSA National Leadership competition

Or can they?

They expected to receive more financial assistance from their high school, but they are not. Avery has kicked in everything they can and a couple of other companies have kicked in some cash, but they are still about $3,000 short of their goal.

This blog explains the project.

They might not be my kids, but they are someone elses hardworking kids and they deserve this chance to shine.

If you can spare a few dollars and help them out, please donate here.

Look at it as an investment in all of our futures!  

Thank you!

Wednesday, May 25, 2011

Going Up

Nolan's platelet count was 369,000 today. That is awesome news!
Raegan, Nolan's nurse, (ironic, huh) warned me to not get too excited as they could still fall, but we'll take this victory and try not to think about it for one week when he has the next blood draw.

I still can't help feel like I need to hold him back from being rough and tumble with his sister and friends. I've told him NO so many times when he asks to do things that it has become my standard answer. He has taken it all very well and, for the most part, not done the things I've told him to do. His gestapo sister has also helped keep him in line. They were playing at the neighbors (diagonally behind us) and I was sitting on our deck and I could hear her telling Nolan, "remember you are not allowed to bounce in the trampoline."

We will just keep doing quiet things, like visit our animal friends at the zoo, play at the Botanical Garden, and visit all the local libraries, while slowly working back in the other stuff.

Friday, May 20, 2011

A Breath

Nolan's count on 5/20/10 was 203,000! That is a great number and in the normal range. His little body just has to keep producing those platelets and not eating them up. He has a blood draw next Wednesday, so we have a few days to catch our breath until then.

Keep those prayers coming!

Nolan got a message from Sacramento, CA for his "Prayer Pics For Nolan" from my friend Nancy

Wednesday, May 18, 2011

And Today's Number Is....

Platelet count for today 67,000. Normal is 150,000-450,000.

Before the treatment yesterday, they were 23,000. At that number they restrict kids from anything that could cause a bruise or internal bleeding. No trampoline, no bike riding, no bouncing on the bed, etc. I've even read that doctors have taken away kids rocking chairs when they go below 20,000. (What made that story even harder to swallow was that the child had autism and that was his comfort mechanism.)

Keep the prayers and thoughts coming that these #'s continue to rise and stay there.

They consider anything over 50,000 out of the danger zone for serious (and internal) bleeds, so that takes a little weight from my shoulders for this moment.

He sure doesn't look or act sick, does he?

Here is another "Prayer Pic for Nolan" from my friend, Samantha. She and I were co-workers and were pregnant together.

I can't say it enough, but we are so thankful for everyone's thoughts and prayers. Friends have added him to large prayer groups, Reagan told the lady parked next to us at Aldi about him today and she said she would pray for him, and all the virtual hugs and thoughts are a comfort. As our friend, Diane, who brought us a great quiche and two pies for dinner (thanks again Diane!), said last night, "how could he not get better with all these people praying for him!"

It is hard for me, as his mom, to not focus on the negative of the research I've been doing (google is your friend....sometimes!) . It is the hardest thing you have to do when you have to watch your child suffer and you can't do a darn thing about it.

Today's rise is a step towards victory, but there is still a long way to go, and as we've learned quickly, it is a roller coaster.

Tuesday, May 17, 2011

Nolan Update

I took Nolan to the hemotology clinic at CCF (which is also the children's oncology clinic) this morning. The plan was to be seen and treated there instead of being admitted to the hospital as long as I was comfortable taking him home.

the numbing cream was put on his ridiculously bruised arms, I met with the doctor and fellow who will be on Nolan's case. Of course, there will be no immediate answers. This could resolve in a few weeks, months or never. It's just wait and see and we all know how patient I am.

They decided since the IVIG didn't work as they hoped, that we would try a new medicine, WINRHO. Two blown veins and three sticks later, the IV was finally in. It was terrible. My heart actually hurt for him. The transfusion took a lot less time than the IVIG, 20 minutes as compared to 4 hours, so I was thankful for that. We are home now, but have to go back in tomorrow for a blood draw.

Today's experience was way more traumatic than the ER/ambulance/hospital stay for both Nolan and I. The blown veins were painful for him and hard for me as his parent to watch him be poked over and over with no success.

The reality has set in that this is something that is going to affect our lives for the indefinite future and severly limit the activities Nolan (and therefore Reagan) will be able to do.

Once again, your thoughts and prayers are appeciated by us all. We are lucky to have so many caring people in our lives.

Monday, May 16, 2011

Today's Prayer Pics For Nolan....And He Needs Them

Nolan's platelet count dropped to 18,000 so it is back to the hospital for him on Tuesday morning for another round of IVIG. Of course, he couldn't be in the 90% that only need 1 round and are fine. :(

As I posted yesterday, my friend Ashley started a "Prayer Pics For Nolan" campaign and we got some really cool ones today. Thanks again, Ashley! It is heartwarming to know that people took the time out of their day to think of my little guy (and his twin sis, too.)

The Zahn family- Clearwater FL.

The Lin Family Chesterland, OH

Mercer Babies San Diego, CA 

 The Augustine Family Eastlake, OH

Eadon Family, Cleveland OH
Fatima Gomez- Catalina Island, CA
(I would really like to visit Fatima and thank her in person, beautiful, right?!)

Thank you everyone that has posted messages on facebook and called us. We all appreicate it very much.

Sunday, May 15, 2011

Prayer Pics for Nolan

I received an email from my friend, Ashley, today. It made me cry until Nolan came along and saw his name on the computer and thought it was really "cool beans."

It touched me deeply, that even though Ash is far away and has way more than enough on her plate (she is a Navy Wife and currently a single parent to two little ones while her hubby is off keeping us safe and catching the bads guys while aboard the USS Vinson), she is still thinking about my little boy.

Here is the email.....

"So I read this blog a while back that this lady wrote, and her baby was sick. She asked her readers to say prayers, and as evidence that they were listening they took pictures of the babies name in cool places. She ended up getting pics of his name by the Eiffel Tower, at the beach, ect. ect.

So since I can't do anything else to help out- I am started "Prayer Pics for Nolan." (and of course for Reagan too.)

Here are ours- sidewalk chalk.

Prayers headed your way from San Diego. I think you should spread the word ;)
Good luck with everything. Thanks for keeping me updated."

So, if anyone is inclined, send me a picture and where it was taken and I will post it.

I know so many people have us in their thoughts already and for that, our family is thankful. Nolan's had a few challenges in his short life already and this is yet another one we will tackle together; with the thoughts and prayers of our friends and family holding us up.

Friday, May 13, 2011

Blog Goes Up, Blog Goes Down....Just Like Platelet Counts

Just to keep the fam/friends not on facebook up-to-date (sorry it wasn't sooner, blogger has been down for almost 2 days).....

We got a call on Wednesday that Nolan's counts were up to 69,000. A nice jump from 37,000. He was still not allowed to be "normal" though and we were told once his counts get over 100,000 then he can go back to being rough and tumble with no worries for internal bleeding. They told me to make an appt with our primary doc and have his levels rechecked in one week. As soon as we hung up, I got that appt. scheduled.

Thursday rolled around and I got a call from the Cleveland Clinic that they want to monitor Nolan a bit more closelyand had assigned a hemotologist to him (my guess is because of his cranio surgery, but no one is telling me that.) They wanted him to get bloodwork on Friday to check the count.

I went about my day on Friday thinking they were going to call back and tell me Nolan could go back to riding his bike and bouncing on the trampoline. That was not the case. When they called back at 3p with the results, his platelet count dropped to 48,000.

What does this mean? More bloodwork on Monday. If the numbers are down again then he will be readmitted to CCF.

This is one roller coaster I don't want my boy to be on.

He seems outwardly fine. He doesn't complain about anything and wants to do all the things he is not allowed. It is so hard to keep him down!

Tuesday, May 10, 2011

Full Circle

So I never imagined I'd spent another May 10th in a hospital. The last one was pretty eventful and certainly could never be topped.

But, as fate would have it, there we were in the wee hours of May 10 back in a hospital.

We were missing one. And missing her a lot. When Nolan's night nurse came in for his 4am vitals, she wished him a Happy Birthday and he said, "Yeah, and its my sister, Reagan's birthday too. She is home with Dad. I miss her." My gosh, that boy knows how to get to me.

 Nolan was diagosed with Immune thrombocytopenic purpura; ITP. Idiopathic thrombocytopenic purpura is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. Persons with the disease have too few platelets in the blood.

It was looking like we would spending the whole day (and another night) in the hospital, in fact Miss Sarah from "Child Life" came by to plan a birthday party for the twinadoes, but when that news came down that  Nolan had responded so well to the first IVIG infusion that he would not need another and we could go home!
They waited for Reagan to arrive and then they brought the cake and sang and then came the gifts. Three for each of them. Three really nice gifts.

Of course, I cried.

It's a rarity that your child has to spend his birthday in the hospital, but the folks at Cleveland Clinic sure made it a day to remember. Even if Mommy wants to forget parts of it! Reagan made out, no pain and she still got the loot!

We were in the car on the way home when 1:05pm struck. The moment Reagan was born. And then a minute later, Nolan.

I didn't care. We were together and that was all that mattered.

Monday, May 9, 2011

Nolan's Big Ambulance Ride

So here is the whole story of how Nolan and I ended up on our first ambulance ride together today.

Nolan had been really sick starting 10 days ago. We took him to the doctor a week ago Saturday and was told it was "viral" and would run its course. He was not better by Wednesday and started to complain (I mean Nolan doesn't complain about much, but he was really fussy and uncomfortable) about his ear hurting, so we went back to the doctor and they gave him a 'script for Amoxicillin to get filled "if he needed it on Thursday." He was not any better with just the ibuprofen, so I got the script filled and started giving it to him on Thursday.

He has seemed fine since then and had a ball at his birthday party on Sunday. When Bill was putting his PJ's on Sunday night, he looked shocked when he pulled down Nolan's pants and saw his shins COVERED in bruises. We thought maybe he just played hard at his party, but when he got up Monday morning, it was apparent that the bruising issue was getting worse. He got a large purple welt in his elbow and that is when I called his peds office.

They asked me to look on his body for a red pin-point rash and sure enough, we found some spots under his left arm (more appeared on his back later.) She said that with those symptoms she had to advise me to get him to the nearest ER. She asked which was closest and I said Lake West and I said I’d rather take him to Hillcrest since they have a peds ER. She said she could not tell me to do that since she had to advise me to take him to the nearest ER, but if it was a matter of a couple of minutes than I should make the choice. So, off to Hillcrest we went. Bill was home sick, so we all went thinking it would be a quick trip. Not so. The ER doc knew what it was pretty much right off the bat and bloodwork confirmed it. (If you ever need to take your kid to the ER go to Hillcrest. We've experienced both Hillcrest and Lake West and there is a world of difference.)

Idiopathic thrombocytopenic purpura (ITP). Idiopathic thrombocytopenic purpura is a bleeding disorder in which the immune system destroys platelets, which are necessary for normal blood clotting. Persons with the disease have too few platelets in the blood. With Nolan’s cranio history, they did not want to take any chances of a brain bleed, so they transported us by ambulance (and a very cute life flight crew) to Cleveland Clinic’s main campus downtown.

He began a 4 hour course of IV treatment called IVIG that is supposed to “re-set” his body so it will start creating platelets and not attack them.

Fingers crossed that this works and he will only need one course. That is the case in 80% of kids.

I asked if I missed any signs and they said no. The bruising is the first.

We’ll probably be celebrating the twinadoes 4th birthdays in the hospital, but that is OK, we will all be together and that is all that matters.

Thanks again for everyones emails, texts, calls, posts, and thoughts and prayers. Our family appreciates it.

Good night from M50.

Daddy brought Nolan all his "stuff" he needs to sleep with. Lightning blanket, bear from the buena vista in san fran, and a glow in the dark star. special thanks to Aunt Jan Ross who started the nightly singing of Twinkle, Twinkle tonight....Mommy didn't have it in her.