Wednesday, December 30, 2009

We are grateful to receive.....

I just had to post about Ariane's knitting. I can't knit.. but I LOVE knitted things. She made the boys the most amazing socks... I LOVE my woolie socks, but socks for little boys are impossible to find! There are actually two pair for Manny, but I think the blue ones are on him right now, as he's in the backyard with Steve. They're superwash wool even!

Steve got this awesome hat. I think my Dad needs one of these!

I'm getting a pair of absolutely gorgeous fingerless gloves (I saw one, but they're still being knitted.) I can't imagine how a mama with a full time job and two kids might have ran out of time to knit. I LOVE you Ariane.

Ok, and here's just some more fun video of the holidays, just for fun:

First, one of the boy's presents from Granny and Pops. Jake LOVES it. They also got them a large therapy ball (thank goodness, because ours got busted). Their gift to Steve and I was a membership to the Creative Discovery Museum. WHOOHOO! We actually used it yesterday and they had a blast.

And, NOWHERE else will do for Jake, not even his very very favorite places. I actually made the mistake of telling him where we were going a day in advance. Sheesh at the meltdowns! I won't do that again.

And lastly... Jake's latest food obsession. Don't you just love the way he says 'sushi sandwich'?

Ok, that's all for now. BTW. I truly appreciate all the friends who follow my blog and offer us support whenever we've had a rough time. Some of you call or write me every single time I post, and you just don't know how much that means to me. I don't know what we'd do without the people who are interested and involved on a day-to-day basis. So many friends and family members called, texted and FB'd on Christmas day (sorry that we were in the woods and couldn't reply, we love you all and heard everyone). Hope everyone has a great new years celebration.

Holiday Update

The "pressure cooker" of the holiday season is almost over. Again, its no secret that I'm a bit of a scrooge, but, since get-togethers that revolve almost 100% completely around gift exchange and blatant consumerism with less emphasis on simply being together and getting to know each other go very much against our ideals and beliefs, it can be grueling. However, I was very disappointed that we were unable to make it to Mamaw's get-together, especially since it was her first one without Papaw. Unfortunately, myself and both boys were very sick during that weekend, and I actually ended up at urgent care with a myriad of ailments the day we were supposed to be at Mamaw's. The boys healed quickly, and I am still on the mend, but we managed to have a beautiful holiday.

Santa came to visit one day early, on the morning of the 24th. The kids LOVED their train as you can see here:

A friend of mine, a grandmother herself, told me the other day, "You are a family now, make your own traditions that fit your lifestyle and beliefs, it doesn't always have to be the way 'grandma used to do it.'" She's enjoying seeing her own children and grandchildren begin their own traditions. I think she's a special lady for having this attitude. We have our own beliefs, but just like everyone else we just want to be with people who are accepting and respectful during this time. This was our second year at Kevin and Ariane's house for Christmas, and, since nobody threw up this time, it was awesome. Christmas day both families (we missed you Donovan!) spent communing with nature with a trip to High Falls State Park. Because of the copious amounts of rain that we have received lately, the waterfall was an awe inspiring experience. A stretch of river that is dangerous on a normal day (any waterplay in this area is strictly forbidden) was a death trap. Absolutely gorgeous and an experience I'll never forget.

Although Manny only slept a few hours each night, which made me tired and grumpy, I was so glad to spend those days with our friends. I think it will be this way for many many years to come (if they'll have us). Thanks for having us, Carithers Family.

The kids have had a great holiday. They have received some really really nice gifts. Both Steve's family and the Carithers understand and respect our "toy rules", knowing that its not just me being a horrible nasty "mommy dearest" in making these rules, but that its just us trying to do what is right and that its important to what we are trying to teach our children as well as their developmental needs.

After a couple of days to recuperate, my best friend in the whole world is, as I type, on her way here from St. Louis. We've been friends for 16 years and have been through hell and high water together. We usually get to see each other about twice per year, but due to well, life, its been almost a year and a half. I can't wait, and I'm about to jump out of my skin waiting for her to get here.

We'll probably do nothing but watch kiddies on new years eve, since a babysitter is out of the question, but Katy the door once they go to sleep! Happy New Year!

Tuesday, December 22, 2009

We Got a Santa Picture!

I'm actually very very happy with how today went, despite the unimaginable situation that we encountered. The visit to Santa was completely impromptu. I thought about sending this as a letter to the editor (thats why I mentioned neither boy's name), but I probably won't. No use stirring the pot in this weird little small town.


This morning my 4 year old son came to me and said "Wanna go see Santa." This is a big deal to my family and I, because my son is autistic, and we're not always sure what is going on inside of his head. He talks and has a lot of words but he has a lot of trouble communicating his wants and feelings to us. I didn't even really know that he understood the concept of Santa, or that he could GO see him, even though we try to explain.

All morning he asked. I couldn't believe it. I was skeptical, but I was taking my son to see Santa. I didn't even care about a picture, because we have never been able to get a professional portrait done of him. He simply can't sit still or understand most instructions and gets very anxious in any new situation. Minutes after Walnut Square Mall opened, I headed to Santa's headquarters with my son and his two year old brother. We only had to wait behind one family who was photographing their baby. It took a bit of time, so my son was impatient, and I was getting worried that he would melt down. My stomach was churning with anxiety hoping that this would be a good experience for him as he tried every opening to run to Santa and into another family's picture.

As soon as the family in front of us was finished I said "Its your turn!" and my son flapped his hands wildly and doubled over giggling in excitement. Almost at that same moment, a group of three ladies, all senior citizens, walked up to Santa's entrance. The one in front began banging on the table to get someone's attention, while I spoke to the lady in back. "Oh, please, we've been waiting a long time and my son is getting very impatient, we were here already." Then the ladies proceded to go stand by Santa for their picture. I exclaimed "I told him it was his turn, we were next!" Two of the ladies looked at me like I was a nutbag, while the one I has spoken directly to mouthed "I'm sorry." out of eyesight of the other two. My son burst into tears. He cried and cried while I tried to wait for the ladies to first have the picture made, for them to argue a while with the photographer, and for them to socialize with a friend who walked up.

When it was finally my son's turn, he ran up to Santa, put his head in Santa's lap and sobbed for a second, then pushed him away and ran to me saying "Go home?!" I took him to the car. I wanted to cry and I was very close to it. We were so close to this being a good experience.

While putting my sobbing son in the car and choking back tears, a tiny voice says "Go see Santa?" Really? After all of that, my son was asking again. Usually, once he has a bad experience at any place, he may never want to go back again, and his memory is VERY good. I asked him if he wanted to go back inside to see Santa. He said "Inside, see Santa!" Of course I loaded up two boys again, and not only did we get to see Santa, we got a picture with both boys.

Please be kind to others, and look around and take notice to what you are doing during this holiday season. Speak up if you notice one of your friends being unintentionally or intentionally rude. Never underestimate the importance of an event to a child, and never make assumptions about someone else's situation.


Wednesday, December 9, 2009

MRI appointment (aka, "This is the appointment that never ends.")

Once again I got up at 4:30 AM, got everything in the car, and picked up a soundly sleeping Manny (guaranteed to sleep through the night if he has an MRI appointment, and no other time), and put him in the car with his pajamas and a sippy of juice. Check in and waiting went well. Only the receptionist decided to bring up last month's visit. I didn't even respond to her, especially since she had just been rude to myself and a terrified looking couple with a 22 month old, also diagnosed with NF1, here for her first MRI.

Manny showed his propensity to tear out an IV line with his teeth once, then, after another was positioned and I was left to hold him down while he screamed hysterically, the nurse showed up and sheepishly told me that the wait would be anouother 45 minutes or so. Ugh. So.. thank the universe for babywearing and my Kinderpack because I scissored Manny between my legs long enough to hook up the carrier in the front carry, put him in, and that way not only could he not reach his IV with his hand, he also couldn't reach it with his teeth as long as I kept my arms in a "hug" position. About 1 minute of that and he was fast asleep. Whew. Once we were called in the doctor and nurses insisted that I put Manny down instead of sedating him while he was still in the carrier, like I suggested. So, he ripped out another line with his teeth, and once yet another IV line was put into his arm, he was finally sedated.

I had a great nap and he was brought back to me, all corpse-like and weird. He woke up pretty well and we went to lunch, then back to Dr. Aguilera's office (the hematologist/oncologist).

Great news! The tumors have not changed one single iota. They have not grown or changed, nor have any more appeared. She wants him back for another MRI in six months (instead of the four she'd suggested before). Hopefully, if that one is the same, we can go to MRIs ever year, instead of so often. This is the best news that we could have hoped for.

Next she sent me off to audiology to see if Manny would cooperate with an audiogram. We were unable to coordinate the hearing exam with the MRI this time, as Manny wouldnt' be able to be sedated long enough. The audiologist did a few tests that we couldn't really complete, as Manny was tired, but she did say that Manny has quite a bit of negative pressure in his ears, possibly due to congestion from a cold, but also possibly due to fluid buildup behind his eardrums. Manny often complains of ear pain and acts like he has an ear infection, though no infection is every found to be present. Its possible that he has fluid in his ears that could be causing an issue with his hearing, hence the speech delay. After speaking to the audiologist, we feel like this is an avenue that we definitely need to investigate.

I made it back home around 5:30. I'm tired but happy with today's appointment. I'm off to try to relax for a while.