Secret Identity

Found this old pic of J and thought I share and try out Photobucket at the same time.

Growing

Jackson had his Endocrinology appointment a few weeks ago and things went well. I really liked the doctor and she explained the hormones and reasons why Jackson was in need. Not only his one kidney but he was born 5 weeks early and was smaller than other kids born that early. He hasn't caught up and so it is time to help nature.

As expected Jackson has a superstar at taking his shots. I am so blessed to have a child that not only willingly takes his medicines/shots/treatments but actually gets upset when they are over and wants to make sure we don't forget. He listened very well when the nurse showed us how do to the shots and every night makes sure we follow the directions to the letter. One night I forgot to wipe his arm down with an alcohol swab before the shot and he jerked it away and wouldn't let me do the shot until I did the wipe. The shots are not like getting a nice massage, don't worry it is a needle and DOES hurt but just a bit, a little like getting your blood taken, by a good professional, not like the lady who poked around under my skin for 10 minutes once before I finally passed out.

Side note: The nurse said one of the sites we could give his shot was his bum. But Jackson giggled so much when we tried doing that it just didn't work. I thought he was ticklish but turns out he just thought it was a hilarious place to put a shot.

We haven't seen any growth yet, he's only been doing the shots for a week, but he has had a great increase in appetite. Which is funny because it is not supposed to be a side effect of the growth hormone. But since he started the shots he has eaten a lot more at each meal and eats every meal like he may not get more so he'd better eat it all NOW. So funny and great to watch my little one that usually won't finish one nugget now scarfing down four nuggets and almost all his fries from a Happy Meal (yes, this is one family that is actually encouraged by their doctor to give their child fat, fat, and more fat to keep him growing, we've even given him straight butter from time to time!).

So that is the update. Thanks to everyone for your thoughts and help. So far so good with the hormones..

Dr. Kari aka Momma Bear

Most of my readers (are there more than one of you out there??) know Jackson has had a hard time gaining weight from the beginning. First it was the severe reflux that got him a lovely feeding tube in his nose for several months. That was finally properly diagnosed and he got the right medicines and BOOM he started eating. BTW I was the one who went out seeking answers as to why he was not eating. My Nephrologist (kidney doctor) and his staff just kept checking weights and raised the possibility of him getting a G-tube (feeding tube in his tummy, permanent instead of temporary nose tube). I pulled a "momma bear" and started asking anyone I could think of for help. I was led by a strong feeling to contact an old coworker whose husband is a doctor who Just Happened to know a WONDERFUL GI doctor who diagnosed Jackson and helped us get the right meds. I am convinced the Spirit pushed me to contact these people and get answers.

***The Picture at the top is Jackson at his Christmas program. He is DARLING in his little suit but you can see how much shorter he is than any of his classmates.***

Forward to the present when Jackson is now 5 and his 2-year-old brother is almost as tall as him and weighs only 3 pounds less. I have always thought my Nephrology office was on top of this (what was I thinking, see previous paragraph). Last visit in February I told his dietician to remind me why he wasn't gaining weight. Was it is his Stage 2/3 Chronic kidney disease (only has 1 kidney) that made it happen or what? She says "Well most kids with his stage of kidney disease don't have this problem. We don't really know why he is not gaining weight." WHAT!!!!! I was so, excuse my language, pissed at this statement. I have been basically begging them for 3 years to start growth hormones on the recomendation of his awesome pediatrician and was always shrugged off. This time I told them I had gone over them and made an Endocrinology appointment on my own to get another opinion. All of thesudden they are tripping over themselves to get me info, referrals, scans to get growth hormones. Jackson had a bone scan done to determine if his growth is just slower and nope it is right on track.


So the point of this long post is to ask anyone to give me opinions, ideas, names to contact, people who have done the growth hormone and might want to talk to me or if you can tell me their experience. My Endocrinology appointment is next Monday and I fully intend to keep it and get another opinion. Watch out, Momma Bear is on the loose and she don't take no prisoners!!

Maybe I should just break out the Nyquil

Every night I get the boys ready for bed I feel like I am preparing a small town for battle or something. Both boys have rooms that get cold at night so I have to remember to plug in 2 heaters (well, I have to let Ethan plug his heater in or he throws a fit). Both boys have had a cough so I have to fill and plug in 2 humidifiers and Ethan also gets a breathing treatment since his cold has been for ever. Jackson has to have 2 blankets (the monkey one and the Cars one, nothing else) and Bill the stuffed elephant he won in the Claw game at Walmart (he is GOOD at that game! and has won 3 different prizes over time). Ethan's HAVE to HAVE changes from night to night but the pure NEED for the item does not, he MUST have whatever it is to sleep with, anything from a little football to a block to a bobble head he found. Both boys also get a small cup of water to take to bed and drink during the bedtime routine. Just thinking of all I have to for bedtime makes me sleepy some nights!

To be called a mother

Our family has been passing around a cold that it seems a lot of people have right now. A few days ago Ethan and I were both pretty bad and I was holding and rocking him. He was pressed close to me and calming down and all the sudden I realized what an honor this was. That I was the one he wanted to hold him, rock him, be with him. That I was the one who got to bring this child into the world. All of people I am the one privileged to be called his mom. It really hit me at that moment and has stayed with me. I know I am very privileged to have been able to choose to have a child and have it happen when and how I wanted. I have never taken this wonder lightly but it has been imprinted onto my soul many times. I'm glad my cold is going away but I wouldn't trade this time for anything.

We are not a morning family

Jackson pretty much summed up my feelings about morning today when we stopped for breakfast at Carl's Jr.

Jackson: Can I get a shake?
Me: They don't have shakes this early in the morning.
Jackson: Then why did I wake up??

Really, if there isn't chocolate or shakes involved, what IS the point of being up in the morning???

Good boy!

Thanks for all the advice about the temper tantrums. I have tried using the 123 method (Thanks for the idea, Allie!) and it with some tweaking for our situation and personality it is working great. I stop, look him in the eye on his level and offer him three choices. The first is the one I want him to take, "You can stop screaming, go potty like I asked and then go back to playing" The second is the one he should want to avoid "You can keep screaming, go to your room and be bored" and the third is usually something I come up with on the fly and often makes no sense but he doesn't really listen by then so it is okay. This stops his tantrum and he usually ends up smiling and excitedly choosing #1 and doing whatever I wanted him to do. Hooray! The other great advice from Allie helps us parents the most. When we put him in time out those times he won't/can't calm down we leave him there until he stops screaming. We used to go in there a few times to try to calm him down/tell him to stop screaming, etc. Now he just has to do it on his own.

I still have to bend Ethan into his carseat sometimes but he is not doing it as much so that is also better.

The really are good boys in general, it's just hard when they both hit difficult stages at the same time. Too bad you can't freeze time for one kid while you take care of the other....