Monday, March 31, 2008

Just living life...

... one day at a time. I have been working a bunch of hours in the past few weeks to help make up for my missed time from surgery and to pay off our never-ending medical bills. Adding two shifts a week has been a bit exhausting but it has allowed me to prioritize the time I have off from work into more meaningful time with Al and the boys. Carson and Eli are getting so grown up and it seems like everyday they are learning a million new things and adding to their increasingly complex personalities. It is a wonderful evolution. How can they be closing in on turning 3 and 5 in two short months??? I no longer have babies (or even toddlers) and we are chugging full force into a truly fun-filled time.

Carson is growing like a weed on Miracle Grow right now. His appetite is ferocious and our grocery bill is expanding weekly. I can only imagine what it will be like when they boys are teenagers!! The all boy phase of army play accompanied by fake gun noises and gear has begun in addition to potty jokes that can have him hyperventilating on the floor like a silly school girl. Gotta love little boys. Carson also had another evaluation at the Behavior Clinic and got the official diagnosis of severe OCD. This wasn't a surprise for us especially since Al has some mild OCD himself. They are also sending Carson for some more extensive testing throughout April to look at all aspects of his behavior, intellect, social, and adaptability/sensory skills. He will be evaluated by many specialists and hopefully they will be able to put together a plan to assist in his IEP better this year and for future planning for grade school services. The Behavior Clinic still thinks that his IQ is up in the genius range but his outside diagnoses need to be addressed so he can reach his full potential in the classroom and socially. This testing should give us a better idea of what therapies and/or medications can assist Carson in this. He is such a bright and amazing kid that we are looking forward to seeing how new therapy specifically designed for him will help him harness himself so he can function at his top level.

Elias is growing more an more obstinate by the day. He is definitely going to give us a run for our money now and in the future. Poor Carson is relentlessly teased by Eli and his antics. Then our little 'angel' will grin and try to look as innocent as he can. We know better but Carson gets incredibly frustrated and rightfully so. Pneumonia hit Eli once again just over a week ago but at least it wasn't aspiration pneumonia (just good ol' normal pneumonia from crappy lungs) and he didn't need hospitalized. After steroids, antibiotics, and more breathing treatments than imaginable, our little man is on the mend and running around like a crazy man once again. Sleep is getting to be a fight every night with both boys in the same room and Eli is the main culprit. We have resorted to putting the kids to bed at different times and the other one has to be asleep before putting the second in the room. Eli has caught on to this however and will routinely go poke Carson or turn on the light to purposely wake him up. Any suggestions on a headstrong, active, ornery, almost 3 year old former preemie would be appreciated. It is fun to see his personality developing each day though.....even when we are exhausted!

Tuesday, March 11, 2008

2 weeks, 21", and other various #s

Whew, has it really been two weeks since my last post? Sorry about that. I have been in a bit of a blogging slump combined with an even more hectic schedule. Ludicrous, I know. First of all, let me start off by saying that we are all mostly healthy. This is great news considering our family dynamic! Secondly, I have tons to update on. Between the boys, work, our health, blizzards, school, and daily life, this post may get rather boring :) Try to stay with me...there might be pictures. Now where should I start?

Al: Nursing school started promptly on 2/25 for Mr. Dad and he is now attending classes three nights a week. He will graduate with his LPN next May after 4 consecutive 15 week semesters with 1 week mini-breaks in between. It's a huge step but he is throwing himself full force into studying and doing wonderfully so far. I'm quite proud of him for juggling school and working part time. It is not an easy me.

Me: Work is going awesome! I am back working full 12 hour shifts now and loving it. My incision and abdominal muscle gets very sore about halfway through the day but it is tolerable. My lifting restriction is up in April so only three more weeks to go until I can pick up my boys! I can.not.wait.

Carson: This boy just keeps getting more intelligent by the day. He is adding, subtracting, and spelling/reading. Growth is definitely a non-issue with the C-man and he is comfortably fitting (with adjustable waist pants) into 5s and 6s. He is 42lbs and almost 46" tall. Where is my baby going? We have been dealing some issues with his behaviors and activity level over the past two months and have changed his meds several times. Since the last med change, things have been much improved and he told us the other day, "I feel happy!". We have an apt with the psychologist on the 17th to make sure things are heading in the right direction. Carson also has a NEW girlfriend at school. Her name is Charlotte and he is in love. Today he even wore a special blue sweater because he knew Charlotte would like it! He is such a flirt.

Elias: Our little ham. Today we got awesome news. We had a joint meeting with his GI doctor and surgeon to discuss the recommendation of his motility doctor to re-do his Nissen fundoplication. Al and I have been worrying about this apt and upcoming surgery for the past month and today was a great stress reliever. Both doctor's agreed that the cons outweighed the pros of re-doing his Nissen at this time. His surgeon said that 2nd time fundos usually have slightly worse success rates and much higher complication rates. He said that he couldn't promise that Eli would be able to eat orally again but he could guarantee that Eli would be on tube feeds for at least 2 months post op due to swelling/retching. His surgeon usually only does fundo re-dos on neurologically devastated children who are likely to be tube fed for the rest of their lives. Eli definitely does not fall into this category and his surgeon is so happy with the progress that he has made and doesn't want the guaranteed regression of skills the surgery would entail. His GI ordered another video swallow study(VSS) to look at Eli's swallowing function to see how his aspiration from above is doing. If it looks good, they are going to manage his reflux with careful monitoring and pursue the Nissen re-do only if he keeps getting aspiration pneumonias. If the VSS looks like he is aspirating again, they will place a GJ button and take Eli off of oral liquids but keep him on oral solids to try and reduce him refluxing/swallowing and aspirating. They will also up his Prevacid dose from 30mg/day to 45mg/day. His GI wants to keep the goal of moving him closer to 'normal' if possible since the ultimate goal much further down the road is to get him off his tube entirely.

YAY!!! It was a great appointment. Now we just have to keep Eli's lungs healthy and pray that his VSS shows no aspiration or micro aspiration! It was a wonderful news for us all. Plus the little stinker is growing like a weed and is now almost 30lbs and 38" tall. Not bad for a micropreemie who had severe FTT at 14 months, huh?

So....that about does it for us. Aside from the GI bug Eli caught two weeks ago when he threw up for the first time since his fundo in May '06 (ACKKK!), Carson staying up for 40 hours straight last week due to mania, and the Blizzard of '08 with 21" of snow!! I hope everyone is doing well and staying healthy. Spring is (hopefully) right around the corner and the birds will be waking us up with their sweet songs soon enough.