Monday, August 30, 2010
Friday, August 27, 2010
When scheduling for it, the tech went through the things to do for the procedure. She asked how old Brayden was; I told her three. She proceeded with the instructions of two glasses of water right before the ultrasound and do not go to the bathroom.
Hmmm, I interrupted and told her he was only J-tube fed and in diapers.
She said never mind and just to bring him in...for once we had it easy.
Brayden did alright for the ultrasound, rolling him back and forth to get the appropriate pictures.
Then he and I waited in the room. The tech came back to say that the preliminary reports show little sign of a kidney stone but the doctor needed to look more thoroughly.
I have not heard the final report yet. I am wondering where that 9mm kidney stone went...
Wednesday, August 25, 2010
Brayden handled the day fantastic. All the noise from the children, a new place, touching and trying new things...he was such a big boy.
His little piggies liked the shredded tires (for fall zone at the rock climbing wall).
And he made friends with a frog.
Tuesday, August 24, 2010
Monday, August 23, 2010
Thursday, August 19, 2010
The assessments are questions about diagnosis, medical needs, medications, developmental skills, etc.
Filling out the form, his diagnosis section is very full (since he does not have one diagnosis but a list of items)
Medical needs, full.
Developmental skills...nothing. He got no marks for developmental skills. I consider his crying as communication but for the assessment it does not count. I consider him kicking his legs when he is mad as movement but that does not count (they are looking for rolling, crawling, walking, etc.).
Technically he performs at the newborn level. But I know he is a sweet and stubborn 3 year old boy. Who cries when he is unhappy, kicks his legs when he is really mad, sucks his left pointer finger and whines to get daddy to hold him.
Monday, August 16, 2010
Sunday, August 15, 2010
Friday, August 13, 2010
I did keep the stone that he passed in a ziploc bag safely tucked away in his dresser...as icky as I thought it was to keep it, the doctor actually asked me to bring it to the lab!
Meanwhile, Brayden's neurologist called with the results from the sleep study. Brayden has obstructive sleep apnea. The are three possible causes of this: low tone, large adenoids or large tonsils. Brayden will be seeing an otolaryngologist (the ENT). Large adenoids or large tonsils could mean surgery to remove them. If it is just low tone, they will look into other options.
Wednesday, August 11, 2010
Tuesday, August 10, 2010
While that might not seem like a big deal. To me it is. Brayden's needs tend to be our first priority, he needs everything. Carter and Luke are certainly understanding about it all.
Last night was Carter's first tackle football practice. Jeremy is coaching Luke's team, on a nearby field. I was home with Brayden because it was too hot and past his bedtime. Carter was at his practice by himself. We thought he would do just fine.
That is not what happened. Carter told the coach he was feeling sick. Carter ended up sitting out for the majority of his first practice, after a while he was laying down on the sideline (completely out of character for him). Another mom tended to him and walked him to Jeremy's field.
Was Carter nervous for his first practice, bothered that his parents were not there or really sick? Either way, I was not there for him. Jeremy brought the boys home. Carter was visibly upset, I took his temperature and it came up about 101.5 degrees. He was not feeling well.
Jeremy and I felt terrible that we were not there for him when he needed us. I know that it is just a little thing and he may soon forget. But there are so many little things where Brayden ends up being the priority. My heart hurt last night, I love my boys oh so much and never want them to feel alone or second tier.
I will be at Carter's practices and Brayden will make do.
Carter (and Luke) can have Chinese food, instead of cereal. I will be there for him.
Sunday, August 8, 2010
Friday, August 6, 2010
Primary ones, meaning ones we see way too much
- Pediatrician (the file is Brayden's from the ped's office...obnoxiously huge)
- Nutritionist for Ketogenic Clinic
- Neurologist for Keto
- Now adding Nephrologist
- See the people at the lab, for blood and urine work ups, way to often
Additional (meaning ones we see every 3-6 months)
- Radiologist (changes out the G-J tube)
Others (now, only when needed)
- Pulminologist (for the sleep study and monitoring, at least is what I have been told)
I cannot forget to mention the Pharmacist, he is a great one. We see him, on average, every other week. Brayden meds are always being adjusted.
My favorite things is when Brayden is at a new place and they ask for medical history and doctors.
Wednesday, August 4, 2010
The Coleman family; one of their daughters is in Brayden's class at school, Jeremy has known her dad since grade school. And her mom just finished a children's book about her daughter, I am Justice, Hear Me Roar! Carter and Luke love hanging out with her brother.
Monday, August 2, 2010
Another friend of the Jenkins family, Elena, has delivered (on multiple occasions) a little pink box with a black and white sticker. A couple of years ago, we stumbled upon a humble little bakery that I came to enjoy. She remembered that I have a love for the yummy treat inside. Want to guess what the place is? A big hint...they just got a show on TLC.
Many others have provided food, goodies, emailed us, dropped a note in the mail or called (I have mentioned before that I have the best neighbors). All mean so much.
Today, I dropped the boys off at soccer camp. One of the soccer coaches (who is fresh out of college) helps out with soccer during the school year with Luke's age group. The past year Luke was not with his age group because he was playing up with Carter. The soccer coach thought Luke would certainly be there because we hardly miss a day of soccer. This guy had always been so kind to Brayden, always talking to him. This morning when I was dropping Carter and Luke off for camp, he told me (called me Luke's mom since he has no clue what my name is) that during the season he carried around an extra soccer shirt to give to Brayden but he never saw us. I told him that I really appreciated his thoughtfulness. Soccer dude, that was thoughtful and never expected.
a little bit goes such a long way.