Wednesday, November 26, 2014

5 Days of No School

I've been out of. On November 14th, I had my wisdom teeth pulled, and it totally threw me off. I thought I scheduled the appointment for a day that Gianna didn't have school, but it turns out she was supposed to. I didn't send her because I didn't realize until it was too late. I wouldn't have been able to send her anyway, because no one would have been home to get her off of her bus.

I've missed appointments because I have been so thrown off with my days. I STILL need to call to set up a new therapist for AJ. I need to reschedule a ton of appointments. I need to reorganize my entire house. I need to figure out what to do with the Christmas tree this year. I need to continue to go through my clothes to put aside those that don't fit me any more. So much that needs to be done.

But first, I need to get through this Thanksgiving break. AJ came home from school today unhappy. I'm not sure why, he said nothing happened. I suspect he's upset that there's no school for the next 5 days. He has a love/hate relationship with school. His teacher is fantastic, he has friends, but he struggles with being overwhelmed. He starts his work and feels like he can't do it. It frustrates him. Mrs. R is awesome, and encourages him to take breaks when he needs to- go sit on the rug, get a drink of water, etc. Little things so that he can escape the work momentarily, then get right back on task. She tells me these breaks have been happening more and more as the school year goes on. It started off as once a day, but now it's more like once per subject she was telling me. I am concerned, but I have faith his teacher is doing all she can to help him. The school psychologist tells me they can't do another eval on him, but without that, requesting an IEP or 504 is pointless. We've been denied twice before because his "behavior doesn't affect his learning" while at school.

I keep saying it, but when we see a new therapist, I sure hope they can help more than his current one. I can't take this much longer. When he came home, he was upset and picked fights nonstop with Gianna. Snatching the tablet out of her hands, taking toys from her, pretending he was going to share the blanket with her then saying "NOT!" and laughing in her face. Gianna adores him, and loves to sit with him and play with him, but it breaks my heart to see him act so mean and bully her like this. I keep trying to tell him that one day, he's going to really regret it. It doesn't seem to phase him in the least.

I don't know if I mentioned it previously, but 2 months ago, we added Seroquel to his medications. We started at half a pill (12.5 mg) every day after school, and just bumped it up to a whole pill after school, and an extra half as needed for agitation and outbursts. I've not yet felt the need to give him that extra as needed, but have no qualms in doing so if I must. I have a feeling that I will need to at least once during this break.

Speaking of break, I am not going to enjoy this break if this behavior continues. I've decided that I'm going to start implementing chores as punishments. This will accomplish two things. One, my house will be clean pretty quickly, and two, it will keep the kids busy. With any luck, one or two additional things will come from it- One, my children will discover they actually like cleaning, so they'll do it willingly, more often. And/or two, they'll hate cleaning so much that they'll be extra kind to each other, and work extra hard to get along. Hey, I can dream, right?!

Speaking of being kind, have you checked out the Boogie Wipes giveaway yet? If not, head on over and enter. Bring your best example of spreading kindness with you!

Tuesday, November 18, 2014

SpinKindness with Boogie Wipes and Boogie Busters! *GIVEAWAY*

As most of you already know, I belong to a fantastic program through Boogie Wipes, which puts me as a Saline Ambassador. What this means is every quarter, I receive a shipment of Boogie Wipes and other fantastic products. Usually Kandoo products (Kandoo wipes, shampoo, hand soap, sanitizer, etc). This quarter also includes DREFT products as well! Unfortunately, I wasn't able to take a picture of my shipment before my kids tore into it, but my teammate, and fellow blogger, Mammanatty, allowed me to use her photo. Please like her page HERE, and check out her blog HERE.

This quarters focus is SpinKindness. So, what is SpinKindness? It's about making a difference through simple acts and little gifts. It's about being kind to someone, and hoping to create a chain of kindness, hoping to make someone's day just a tad bit brighter. It's the idea of being kind, intentionally. Not just doing something that *might* make someone happy. You know that neighbor you pretend you don't see? Why not say "Hello" to them? It's as simple as that. It doesn't have to be huge, start small! That person behind you in the grocery store short a few cents for their groceries? Maybe you're able to help them? You can read more about it HERE.

We'd love to have you join in our movement! We'd also love to have you enter our giveaway in celebration of this SpinKindness movement! Winner will receive a prize pack direct from Boogie Wipes!! Giveaway starts now, and will end December 26, 2014 at Midnight Eastern. Winner will have 24 hours to respond to the email. If chosen winner does not respond by then, another winner will be chosen. Winners information will be given to Boogie Wipes by the end of December and prize packs will be shipped out shortly after. Please understand that Life in the ODD Lane is NOT responsible for shipping prizes out. Good luck!!

a Rafflecopter giveaway

Tuesday, November 11, 2014

Kids say the darnedest things

I thought my appointment with my hematologist was today. Apparently, it's tomorrow. So, I took a trip there for nothing. But since we were already out, I asked Gianna what she wanted to do. She said that she wanted to visit Beepa (grandpa) so off we went to visit him at work.

When we got there, Beepa asked how she was. Her answer was "I'm not sick anymore!" Then she quickly said "But my brother is sick."

This was news to me. I wasn't aware that AJ was sick. So, my dad asked her why he was sick. She replied "He's sick with an attitude!"

At least she's honest ....

After our visit with Beepa, we hit up the local mall to look for a new pair of shoes that fit her at Payless. We found these Mary Janes, and also picked up a pack of mini Gel Pens and Notebook for her Christmas stocking, all Frozen themed, of course.

We were also looking for a pair of sneakers, but couldn't find a pair at that Payless that she liked. I asked the woman there if she could contact another local Payless and see if they had these sneakers in stock. Once it was confirmed that one had them available, they put them to the side for me, and off we went to pick them up. They were running a promotion, buy 2 pairs of kids' shoes and get a free Frozen tote. Even though we bought from two different locations, they allowed Gianna to have the tote for free. She was beyond thrilled!!

And last but not least, HAPPY VETERAN'S DAY to those who have served in the past, who are currently serving, and those who will serve in the future! Freedom isn't free, and I appreciate all the sacrifices you have made to serve your country.

Thursday, November 6, 2014

Another hospital stay for Gianna

3 years ago, at only 2.5 months old, we learned that Gianna has the same blood disorder that I have, Hereditary Spherocytosis.

It was the worst time of my life. 2 ER trips, a blood transfusion, nebulizer treatments, many many blood draws, and finally, our answer. This was my status on November 3rd, 2011 in response to everyone asking how Gianna was and what happened:

I have never felt more helpless in my life. To watch my poor baby hooked up to IVs, having veins blown because they are so small, needing the transfusion. It was hell, to say the least.

After her transfusion, she looked great! Better color, and she was an entirely different baby. So happy!!
I still have this outfit. It's one of my faves!!

Just recently, we spent another 3 days in the hospital. I took her in to the ER on the 20th because she was very lethargic, hard to wake up, 103° fever, refused to take medicine, and barely drank. We sat in the waiting room for 3 hours before we were brought back to a room. The nurse we had was rude, and insisted on making Gianna take Tylenol. While I understood how important getting that fever reduced was, he was very rude. He mentioned possibly needing to give it to her rectally, and I told him no, she is not allowed anything rectally as it could cause hemorrhaging, especially if she's in an anemic crisis. He said it didn't matter, that they WOULD give it rectally if she didn't take it. 

After stating that, he attempted to give her the liquid Tylenol via medicine syringe. When he put it in her mouth, and squirted it, rather forcefully, she vomited all over. Which then further made him irritated. He stormed out of the room, not even offering to help me clean it. I don't mind cleaning up, after all, it was my child, but I didn't appreciate his obvious irritation with the situation. He stormed out of the room, and didn't return for another 10 minutes. And that was to threaten that she better take the medicine, "or else". We finally got new sheets and new blankets. Especially since she ruined her shirt.

After daddy brought new clothes for her.

The nurse wasn't the only one we had trouble with. The ER doctor was less than willing to listen to my concerns. I did not catch his name, as he said it very quickly when he first came out, then basically ran right out of the room. He never stayed long enough to take my concerns seriously, or even to listen to them all. I requested a blood draw be done, because of her blood disorder. He asked me why. I stated that I wanted to know what her hemoglobin and hematacrit were. He told me those numbers were irrelevant at this point in time. He asked again what I was looking for. I stated that I wanted to know what her numbers were, and if there was an infection in her body. He stated that there WAS an infection, but it was viral and nothing could be done. He asked me if I'd be able to get an appointment with our pediatrician the next day. I told him that I thought discharging her would be a foolish move, but yes, I could get an appt the next day. I also stated that her pedi would order a blood draw if he still refused. Long story short, he FINALLY agreed to one, to shut me up, as he put it. The results came back, and it was determined that she needed to be admitted immediately.

Despite being admitted, we were held in the ER because there were no beds available on the pediatrics ward. The doctor never returned to our room after agreeing to doing the blood work. I have no idea why, and honestly was not unhappy. We finally were taken upstairs around 6am the following day. It was then disclosed to be that her hemoglobin (9.5 a week ago) had dipped down to 6.8. Her specialist was called, and stated that if it went down to a 6, she wanted a transfusion done. The following blood draw put her number at 6.2, and the one after that showed it climbing back up, so no transfusion was necessary. She had an IV in place for fluids, and medication given 'round the clock (Tylenol and Ibuprofen). Her temperature kept going from 99.1­° up to 104.7° at one point. 

On the afternoon of the 23rd, she was finally discharged. She had been fever-free for 24 hours, using the bathroom regularly, eating appropriately, and otherwise acting like her normal self. They gave her an ice pop (her 4th since bringing her to the ER days prior) while getting her discharge papers ready.

While I wish I could say that this is rare, it seems to be common for us. A few days every few months, she is hospitalized. A virus, a cold, etc. I can't wait for the day we no longer fear colds and other illnesses. 

Ladies and gentlemen, if you made it this far, I hope you take one thing away from this entire long blog post. Please, if ANYTHING is wrong with your children, listen to your gut. Do not take "No" for an answer. If I had not fought with the doctor, verbally of course, we would have never had the blood draws done, and she would not have been admitted. She would not have had the medical attention like she did. Luckily, nothing bad happened to her, but if that doctor had insisted on discharging her, who knows what could have happened at home. We just don't know. My anxiety was through the roof, but I was angry that my concerns weren't listened to. The doctor's reasoning for not wanting to do a blood draw was "It will upset her more than she already is. We don't need to poke her when she's already not feeling well." He paid no attention to the fact that she had a blood disorder. He paid no attention to the fact that her spleen was enlarged. He showed no signs of being concerned with her well being, and neither did the first nurse who saw her. The only one who cared about my baby was me. And I made sure she was taken care of. The doctors and nurses on the pediatric floor were fantastic and made sure everything was taken care of, and that my concerns were addressed and taken care of. 


 You are your child's voice. Make sure you are heard.