The Non Thanksgiving Post

Hopefully pictures of our Thanksgiving will come at a later date. There were EIGHTEEN family members together for our Turkey Day, and the entire week ranged from about 16 to 30 family members all hanging in my parents house. It was overwhelming to say the least for the boys and Brady clung to me like a leech, so I took zero pictures. Hoping to have some from other photographers from the week. Of course I am so grateful for so much in my life and grateful I could spend this Thanksgiving with so many of our loved ones. I hope all of you enjoyed the same. What I do have pictures of, is the one time I wasn't holding Brady the whole week...Brady's belated birthday semi-celebration. We had to cancel Brady's party and due to illness and my mom's transplant we had not been able to reschedule a party and I didn't really know feasibly when we'd be able to, especially with the holidays. My friend Kristin suggested that we celebrate Brady's first year during the week of Thanksgiving with all our family that would be here and I thought that was such a great idea. Brady deserved getting his first cake experience and I'm so glad we were able to have that for him. My boys were complete opposites in their first cake eating experiences. For those of you at Blake's party, certainly remember him going to town on his cake. Brady, not as much. I had him stripped out of his clothes completely ready to repeat the icing fiasco we endured with Blake. I don't think icing got any further than Brady's chin! Oh well. He enjoyed it. I enjoyed watching him enjoy it. I say success!


Happy Birthday again Doodle Bug!!! What a special boy you are to all your family!

Hand-in-hand (in hand)

Horrible blurry photo, but I thought it was SO sweet. Brady is walking more every day, trying to perfect it by the time all his extended family comes in town next week.

Library

We had a full day planned for Saturday and then got so caught up playing and bumming around the house in the morning that our to do list quickly started to become next to impossible to complete. So we decided instead of pushing too much into our day and creating cranky boys, we would make a choice...haircut or library. We've been wanting to go to the really nice new (or by now not so new) library that was built just down the street for awhile now. Brad and I both wanted to check out a book and pretend we have enough time in our day to actually read them and take Blake for his first trip to experience what the library is all about. I love to read and grew up loving the library. It started as a very little girl with story time at the library my mom would take me to and evolved to me wanting to go weekly to pick out a new book. Blake is only 2 1/2 but loves books and I will always encourage Blake to have a love for reading like my parents did for me. But I digress. So, we chose the library and Blake loved it. He was like a kid in a candy shop completely overwhelmed with all the choices but finally picked out four books that are so completely Blake. He is having a great time reading them every night. Now I just hope he's okay when he realizes we return them!


Here is a pic after checking out his first library books! The boy with the super long hair in desperate need of a haircut!

Brady's Latest

At the end of the day on Thursday I couldn't get that Ice Cube song out of my head..."Today was a good day." Yeah, I know, I'm a dork, but after a really stressful week and a half it felt nice to have some things going right. Our appointment at Children's went really well. What an amazing facility and I'm grateful we ended up there. So we still don't have any answers but I feel like we are going down the right path now, which is a sense of relief. I sent out a novel of a recap to a few people and I am not going to put all the details on here, but we have an endoscopy scheduled for December first, which is a little frightening but something that needs to be done. We also met with the dietitian from Children's who worked on a plan with us and will continue to work with us going forward. I left feeling like these people cared and are going to help us get Brady where he needs to be. Then Brady had the best therapy session he's had to date in the afternoon and has continued to do better with his feedings and I just wanted to do cartwheels Thursday evening. Except I was exhausted so I passed out on the couch instead.
So my wonderful friend Heather is like my encyclopedia of medical knowledge and has been a really strong support system from our struggles getting pregnant to now with our struggles with Brady. After I filled her in on our visit Thursday she started scouring her resources of mommy blogs of preemie moms (as her children were preemies) to try and find information that would be useful in my need to start cooking with butters, oils...fats, fats, fats basically. She ended up coming across a blog entry that she thought would strike home with me and boy did it ever. This mom has been through way more than we have with Brady, but there are extreme similarities as well and her blog entry captured my feelings with this journey with Brady better than I could have. If you have a minute, go read, then you'll know where my head is at. Thanks Heather!

http://stefaniewildertaylor.com/2009/05/acceptance/

First I have to report I received a call from the gastro group that I was trying to get in to see. They received Brady's records and said he needed to see an M.D. NOT the physician's assistant and needed to be seen as soon as possible. We have an appointment in the morning. Whew!

I have a few other random pictures I thought I'd post because pictures are way more fun than my medical sagas.
Here is Blake in his Adidas track suit. Um, so stinkin cute! I think he looks like such a future soccer star in this photo...
This is Blake on the tire swing for the first time. Such a big boy now.

And here are two ADORABLE pics of my ADORABLE nephew! Since someone hasn't updated their blog in 7 months I thought the public would love to see Mr. T's cuteness. I received these pics from my bro to cheer me up through my stressful past few days. And it definitely helped. I can't wait to love on this little doll in less than two weeks!!!

Mute

Have you ever had a bad dream where you're talking but no one can hear you and no matter how much you yell or how hard you try to be heard no one listens? That bad dream has been my reality the last few days and I don't think there is anything more frustrating as a mom, than to feel completely helpless for your child in need and to feel your concerns are falling on deaf ears. At our appointment with the gastro last week, we found out that starting last Wednesday, she would no longer be taking our insurance. However, once we switch plans at the 1st of the year, she would be accepting that plan. So she told us, let's try putting Brady on Pediasure/Boost to get him to gain weight and try to hold out on doing anything further until the 1st of the year and if need be I'll refer you to someone else before then. Fine. Except not so much. Brady refused the Pediasure/Boost, refused Carnation Instant Breakfast per her recommendation and as of Friday starting refusing all liquids via bottle or sippy cup. We had a hard weekend with Brady, getting him to drink very little and even threw up which had me concerned about his reflux issues. He was eating table foods just fine. I called gastro first thing Monday. Suggested taking to pediatrician to get ears checked and if ears checked out agreed scope would be next step. Pediatrician said ears were clear, felt scope was a good idea and also pulled out Brady's blood work he was sent the gastro did last month and reviewed with me. Didn't know until yesterday that Brady is anemic. Yeah, gastro never mentioned that part. So talked to nurse, told her ped's findings and asked for referral. Nurse talked to doctor who said, well since you aren't on our insurance until the beginning of the year let's try to buy more time and increase Nexium from twice a day to three times a day and give it a week. Hung up phone...I lose it. Call Brad bawling, then call my dad crying. So frustrated. She'd rather not lose me as a patient than refer me out when we need to see someone?? So I decide to go around her, call another gastro, which happens to be the only other pediatric gastro group I can find on our insurance. First available appointment with the doctor is December, the first available with the physician assistant who can then refer us to surgeon if scope is needed is November 30th. Seriously people? Baby.not.drinking. This morning left message to see if pediatrician would call on my behalf to try and get us in sooner. No call back. Left message for gastro stating I can not afford anymore wait and see's and would appreciate a referral to another doctor since we can no longer see them for the rest of this year. Here is the conversation I had with the nurse when she called me back:
“I talked to Dr. ..... about your concerns. It can take up to a week for the Nexium to fully work. And you need to follow up with the feeding therapist immediately.”
“I have followed up with her already.”
“Well, I’m also going to fax all your records to Children’s so they have them. If you are worried about dehydration, follow up with your primary care physician.”
“Okay, well what about me following up with another gastro?”
“I’m faxing your records to Children’s. “
“But what if I want to get in to see another doctor, who do I call?????”
“I’m faxing your records to Children’s right now. They are the only other pediatric gastro group in the area and I will mark on the chart to call patient for appointment.”

Yeah, I totally feel like I'm in a room screaming and no one can hear me.

2.5

Today my first born is 2 1/2. How is that even possible? My sweet Blake has turned into such a grown up boy and it seems like yesterday I was holding him for the first time as a little newborn baby. The past 6 months dealing with a strong willed, stubborn 2 year old boy who can throw a tantrum like a pro have been challenging, but it is the other side of Blake, the sweet natured, smart, humorous, vivacious 2 year old boy that makes me want to hold onto this time forever and that boy is what keeps Brad and I going on the hardest of days. Brad and I at least once in a day are blown away at just how smart Blake is. I love that Blake can carry on a conversation with us and there is no longer a guessing game of what his wants or needs are. Like just the other week he told me his ear hurt and needed to go to the doctor. Sure enough he had an ear infection. Even the pediatrician commented to us on what an amazing vocabulary and conversation skills Blake possessed for being 2. He can also read. Well ok, maybe its more Blake memorizing his books and reciting them than actually reading, but still, the boy can read every book in his stack of favorites cover to cover. Its pretty amazing to me. He's even recently started learning Spanish at school and knows all the colors in Spanish. Its official, my two year old is smarter than me, since I don't even know the Spanish words for colors. But what makes me the proudest of my first born is not his good looks or his brains, but his sweetness. Blake is the best, most caring big brother. He's loving and patient and looks out for Brady always. Like last month Brady was home sick and I was leaving school with Blake and he got really upset with me because he thought I was forgetting Brady. His sweetness isn't just with his brother though. I was talking to a mom of one of the girls in his class last weekend. Her daughter, Sam, was getting a little bullied (yes at 2) by another little girl in the class. One day this other little girl was pushing Sam and she told her mom that Blake helped her. Talk about being a proud mom! I love that Blake looks out for others and I just hope he will possess that quality always. What an adventure life is on a daily basis being Blake's mom. He makes our days filled with laughter and fun and I do not take any day, even the toughest of days with him for granted. If time wants to slow down between now and his third birthday, I'm totally okay with that!

1 Year Photos/Vitil Stem

Before I bore you with my recap of our first electrode or Vitilstem Therapy session, I had to share these pictures. In addition to having to cancel Brady's birthday party we also had to cancel his one year photo shoot. We were able to reschedule a little over a week later. Brady was just finishing his nasty virus and I don't know if it had to do with that or if he was sleepy, but whatever the reason Brady was Mr. Fussy Pants. And he's NEVER a fussy pants. Just my luck! I was pretty bummed but our great photographer told me he thought he was able to capture a few good ones in between melt downs. I just got them back and LOVE them. There aren't a lot due to the meltdown, but still some good ones.
Here is the link...
http://bludoorimages.com/gallery/jones-762287
Here are a few of my favorites
So, have I mentioned life is stressful at the moment? Throw in a SCREAMING baby, flailing his body, turning red and blotchy he is so upset, because a stranger is trying to hook up electrodes to his neck, and the stress level just sky rockets. That was Brady Monday and as soon as the SLP finally got the electrodes attached to his neck, Brady would rip them off. Wash, rinse, repeat about ten times... The SLP said Brady was the most unwilling patient she had ever had. Nice. We finally got him connected and distracted long enough for him to leave the wires alone. Once Brady gets hooked up, all he has to do is sit in a highchair, eating and drinking and watching cartoons. Oh and get an electrical current sent to his neck. We were pretty worried that Brady would not tolerate the therapy since he got so wound up just having the wires put on, but he did really really well and didn't show any signs of discomfort during the therapy. She started him off really slow and will increasingly add strength. The goal is to have 45 minutes worth of therapy. Monday Brady did 15. But it was a start and the SLP was pleased for our first session. Our next one is in the morning and I pray it goes a little more smoothly. 1 session down, 17 to go.

More Medical Tales...

These days I live in a constant state of stress and worry, although I'm pretty good at internalizing my feelings so at least its not effecting my day to day too much. Every time I look at Brady's sweet smile though a part of me wonders, Is everything okay with him? Why isn't he growing like he should? So the last few days my stomach has been in knots thinking about our doctor appointment and first electrode therapy session this morning. First up, gastro. Last month Brady weighed in on her scale at 17.0 lbs and today was 17.13 oz. The doctor was happy to see Brady's weight shoot up, however its not enough. His lack of adequate weight gain is concerning. Brady's blood work came back completely normal last month with the exception of his inflammatory marker, which was high. It could have been high due to the virus he was starting to come down with or it could be something more serious. She feels however, because the rest of his labs were normal and developmentally he is doing so well and he did gain some weight, that we can try one more "easy" step before moving to the more invasive course of action. Doctors orders: no more formula. Instead, all bottles will be replaced with Kid's Boost (355 calories a serving), all meals will be sprinkled with a calorie enriched powder and all Brady's meals will be as fatty as possible. Our goal, 1500 calorie daily. Our end goal is for Brady to gain 1 1/2 pounds by the end of the year. Isn't that crazy that a measly 1 1/2 pounds would mean the world to us for Brady's weight gain? By gaining that amount of weight, that would finally put Brady back on the growth curve. Yup, little B man isn't even on the growth chart. 1 1/2 pounds would put him only in the 3rd percentile, but I'll take it. If Brady does not gain enough weight by then or we're more concerned before the end of the year she will do a scope on Brady to further investigate what's going on inside. So, for now, stomach still in knots, stress still an every day occurrence. *sigh*
I've already typed a novel and I'm not even to the second part of our day, vitilstem therapy. That will come tomorrow. On the edge of your seats aren't you?!