We Survived

Last night was the sleep study for Zachary at St. John's. I went in expecting the worst. We brought his stuffed monkey, a veggie tales movie, a banana, a book and his Wow Wow Wubbzy blanket. We arrived at 730 pm and the technicians were wonderful. Our room had a hospital bed pushed up against a double bed, a desk and was decorated so cute. Z was a bit nervous and kept saying "Ow". But they gave us a bit of time to settle in and then he began hooking him up to the 10,000 wires. He did great! He whined a bit but once the tech showed him it was just stickers and asked him the color of the wires, he sat pretty still!

I was truly amazed at how smoothly it went! We settled in and began watching Veggie Tales. They came back in for the final "hook up" that involved a device under his nose and that was his least favorite. After we started the movie a second time he fell asleep pretty easily and so did I. He did wake up a few times and had pulled a few wires off so of course they had to come in to reconnect him. It was funny because I know one time when they came in I forgot where I was and I had a brief moment of panic, thinking we were in there for other reasons like him being sick! Luckily I snapped back to reality and convinced myself that my little guy was okay and all was well. I didn't get much sleep but it was worth it. I have to admit it was the first time in almost 2 and half years that I was glad that he didn't sleep all night. When he woke up screaming and kicking his legs, I was so glad that someone else was able to witness it. It can take 10 days for the results so now we just wait and be patient.

Sleep Study

Well tonight we have Zachary's sleep study at St. John's. Z and I are to arrive at 7:30pm and it takes 30-45 minutes to hook him up and then lights and TV go off and we sleep. Funny isn't it? Sleep...he doesn't sleep good and this is going to be so very interesting. The paper said to limit my time in bed with him...ha ha ha! I mean seriously, the kid wakes up and screams, hits, kicks and they want me to not be in bed with him? I am dreading this. The person watching us is probably going to suggest I be admitted to the looney bin and you know what, I'm good with that! :-) The past few nights sleep has been worse than normal so I am anticipating no sleep tonight for me and I pray this test eliminates or pinpoints a problem. We just need to know where to go from here.

This week we have a Parents as Teachers appointment, speech therapy and a speech assessment at the developmental center. I have also requested an assessment with an occupational therapist. We started the paperwork to see if he will be eligible for therapy from the Special School District when he turns 3 and if he is, they will provide transportation to the early childhood center. As I stated before I am confused on what he needs so at this point I am relying the most on his developmental pediatrician to help me determine what he needs. They are increasing his speech to weekly and 2 weeks it will be done at preschool and 2 weeks at home.

Jonathan's first t-ball game is this Saturday and I am very excited for him. He is so very shy and I hope this will help him. And I can't wait to watch him and the other kids have fun.

We had a bad storm last night that sent the boys and myself to the basement for a while. It was crazy but luckily for us, no damage.

More testing (again?)

I keep telling myself that each year will get better...by better I mean less appointments. Obviously things improved in 2009 and now again they have improved for 2010. We the departure of Dr. Kate I really felt lost. I felt abandoned, even though I know she is a person and has to do what is good for her and her family, it still felt like a loss...loss of a good friend. She got me and never made me feel like that mom. I feel like I have to start over. It sucks and stresses me out.

Anyway, we met with Dr. S today...she was Z's geneticist and is now in behavioral/developmental pediatrics. She is truly amazing. I adore her. It was funny because she arrived a bit late and saw Z through the window. She came in and hugged me and said how good he looked and how he grew and how happy she was to see us. Wow. I wanted to cry. I was shocked by the hug but it felt good. I knew then we made the best move for Z by coming to see her. Her office is really a center at Cardinal Glennon. They have lots of therapists and all were very friendly...even during Z's "you interrupted my nap people!" meltdown. These appointments are so stressful because he is so unpredictable and stupid me left the M&Ms in the car that morning so they were nice and melted. Duh! But we survived and got lots of good info.

She feels that Z needs weekly speech therapy and he will also be assessed by their SLP so that we can report that to Early Intervention and the Special School District. She doesn't want him lost in the system. She feels he has problems expressing himself through speech but understands a lot. She also wants him to do a sleep study and attend a behavior strategy therapy session. And she pointed out he has an umbilical hernia that we need to watch...it is rather small and doesn't seem to be a problem.

I am hoping we can do the sleep study at St. John's. The lung doc that saw him in the hospital was incredible and left Jason and I both feeling good about him. Well he is part of the sleep clinic there so I am hoping he can get him in right away but I am not sure what the procedure is for that. I did a bit of research and managed to find Dr. Rob's wife...that sounds funny huh? Well she is a pediatrician and she came in to see Z in the hospital and she checked his stats too. She too was incredible and I remember thinking how nice she was. I have a call into her office hoping she can take on the boys.

So we had a good appointment, learned more and will soon learn even more. The sleep study will also test Z for restless leg syndrome. I am hoping we get answers soon because sleep is needed in this house!

And today he bit a classmate and hit his teacher...he is sweet, really he is!

Smile! Your on Camera!

I mentioned a while back that I shared Z's story on St. John's Mercy Children's Hospitals website and then we did an audio recording of it and well now I did a TV appearance! I hate my picture taken and I hate seeing myself on video but I was so excited to do this and when I was told the interview would be done by one of my favorite tv anchor women, I could not refuse! Every morning I watch Fox 2 News in St. Louis and I laugh along with the news cast and I feel like I know them! You can imagine my excitement at the possibility of seeing these people live and not just on tv! I felt like a 10 year old girl going to a Jonas Brother's concert!!!

I arrived at 7:45 and met Bethany from St. John's and she was very nice. I finally had the courage to ask her if the show was going to be live. Her response of course was, "Yes!" and then I felt the sudden urge to puke! But it was so exciting!

When we met Margie (Did I mention I love her?), I was star struck! She was nice, beautiful and OMG so put together! I just simply prayed my breath didn't stink and I didn't have anything hanging out of nose or anything from the kids left on my shirt! We went back on the set and my head was spinning! I saw John, the back of Glenn's head, Randi and Monica! I wanted to scream and run and touch each one of them and I wanted to take pictures. Yes, I was beyond star struck! Don't worry, I don't have a record of stalking so everyone is safe!

They hooked me up to a mic and there were like 10 monitors and people talking and they all sounded so together and looked beautiful and perfect. Why was I here? Oh that's right, it wasn't about me it was about the kids and letting families in St. Louis know we have a hospital for our children and it is awesome! The same hospital that can give adults wonderful care, also has a new wing to take care of our children! Who cares if I look awful and hate looking at myself in this video...it's for a good cause!

So here it is ladies and gentlemen, my TV debut!

STLMoms: St. Johns Mercy Children's Hospital Is Calling All Moms

Luckily I set the DVR, just in case it was live. When I got home tonight I showed the boys. Jonathan just giggled and giggled and said, "Mom that's you on TV!". Z finally saw it and said, "Mommy. Mommy. Mommy." and kept pointing to the tv and smiling. That said it all. Who cares what I look like...my little boy is alive and well! He is the classic 2 year old...terrible. LOL He is full of life, eager to learn and absolutely amazing! He has overcome so much and I don't think his struggles are over yet, but I know the worst is behind us and it is because of the doctors and nurses that cared for him and knew how to help him. I will always be forever grateful to all of them.