Wednesday, February 6, 2008

Thomas the Train

When we found out we were pregnant we had this discussion with Matthew:
"So Matthew...if this baby is a boy what do you think it's name should be?"
"Thomas the Train" replied Matthew.
We laughed. How cute. Thomas the Train. Hmmm....Thomas. Thomas is my oldest son David's middle name. My husband and my 2 other sons share the same middle name of James. Thomas James. That would continue the tradition of James as a middle name and also tie David in all of this since he didn't get in on the "James as a middle name" thing. I love it! So...it stuck.

So....since I updated you all last we've had a few Dr. Appointments. Just a few. LOL. So I'll just go down the line...(keep in mind these all took place in about a week's time)

Gastroenterology - 1st appointment - National Children's Hospital Washington DC
I HATE driving in DC. Hate it. Seriously. I can't even stand to be a passenger in a car driving in DC. My darling husband knew this and bought me a GPS so that at least I wouldn't have to worry about getting lost in a city I hate even driving in. This this became my new best friend. LUV IT!
So...we went to see Gastro. He weighed 16lbs. 12oz. at this appointment. He's fallen off the growth chart. Failure to thrive basically. She officially diagnosed him with Reflux (yay) and put him on Prevacid and Miralax. She also wanted us to alternate breastfeeding with bottle-feeding. She wanted us to concentrate his formula to 24calories per ounce and add cereal to every bottle. She also wanted us to add cereal and olive oil (for extra fat and calories) to his solid foods. Then she wanted us to come back in two weeks for a re-check of his weight and reflux symptoms.

Opthalmology - Walter Reed Army Medical Center - Washington DC
There's only one thing to know about WRAMC. The parking SUCKS! When you go to park in the parking garage there are people parked anywhere you can fit a car. Even in places where it is clearly marked "No Parking". If you can fit a car in the space-there's one there-even up on curbs. So parking for us on this day was non-existent. We tried, but could not find parking. So Eric dropped me off and went and parked on the street. In DC. In an area that says that you can't park there without a permit because it's for residents only.
Bottom line with his eyes. He's fine. There was a slight astigmatism in one eye, but nothing to worry about at this point. He also couldn't see a particular reflex that he should have seen but he wasn't really concerned about it at this point.
**Ok...kind of a neat story. We had some labwork done while we were there because it could ONLY be done at Bethesda or Walter Reed so we thought we'd kill two birds with one stone. This time they only had to stick him twice. YAY.
Afterwards we went to have a copy of the lab reports that were already available printed and the lab wouldn't do it so they sent us to "Patient Results". We left the lab area and went out to the Directory looking for "Patient Results".
While there a security guard came up and noticed we looked a little lost and asked us what we were looking for. We told him an he said..."Patient Results? I've worked here X number of years and I've never heard of that."
We hummed and hawed over it a few more minutes and somebody came by that he apparently noticed and he stopped her and asked her if she'd ever heard of "Patient Results". She said she'd never heard of it either. She asked where we were told that and we told her the Lab sent us there. So she proceeds to head to the Lab to find out for herself.
While we're standing there waiting for her to come back, the security guard saw someone else coming toward him that he recognized and said, "Oooo...THIS guy should know where Patient Results is". The previously mentioned lady comes back at this point and says, "She meant Patient Records". Ugh. Eric and I both heard her say Patient Results. So the guy the security guard had recognized comes up and the security guard tells him the story and he very enthusiastically tells us to follow him and we'll get this figured out.
So...we follow him and he starts heading toward some offices that are clearly not of the medical kind. Clearly administrative. It's then that I notice that they are in fact the offices of the Commanding Officer for WRAMC. Oooo. We definately had the right guy. This guy was the Deputy Commanding Officer. So we go into this guy's HUGE office and after a short time he prints out our lab reports. He also tells us that he understands what we're going through because he has a special needs child himself. He then gives us his card and tells us that if we need any help with appointments or referrals or whatever to just have our Doc contact him and he'll help in any way he can. I jokingly asked if there was any insider information he could give us on the parking situation and he seriously said "That I CAN'T help you with...Sorry!" LOL So...while the parking situation STUNK, we left feeling like we had had a blessing anyways.

Early Intervention Assessment - Fredericksburg, VA
This one was a fun one. He went and played with a group of ladies for a couple of hours. They took lots of notes and ooed and aaahed over him. Bottom line is that he is a 10 month old who is functioning at a 5 month old level. So...he was approved as being eligible for Early Intervention Services and was scheduled to begin them with an Occupational Therapist within 2 weeks. Yaay!

Neurology and Nutrition - Walter Reed Army Medical Center - Washington DC
Because we had appointments at Walter Reed on a Thursday and then the following day was going to be the MRI which he would have to be sedated for and would have to be there 1st thing in the morning, we decided to go ahead and get a hotel room. This would do two things for us. One, we could take a shuttle from the hotel to WRAMC and not have to bother with parking on the first day. Two, we wouldn't have to fight with trying to make the drive home only to go right to bed and get up at an ungodly hour to try to make the drive back early the next morning. So...we had a reservation at the Hilton. About 2 hours before we were to leave it starts SNOWING. Like not just a little bit. This is what it looked like as we were about to leave.
I seriously needed a valium on the trip up. Poor Eric. I HATE driving in DC to begin with and then to have to drive to DC in SNOW just about sent me to the funny farm.
So...we see the Nutritionist. Now you must know that at this point we had received the results of the Organic Acid panel that had been done back and there were a few things that were high, specifically Citrate. This is suggestive of a Metabolic disorder. So our Neuro-developmental Pediatrician said he wanted them re-done. We didn't have the results back yet at that point. Because I had had gastric bypass there was a possibility that there could be a nutritional deficiency so she ordered some MORE labs on both him and I. Oh, and he weighed 18lbs 2 ounces! Yay!
Then we headed on over to the Neurologist. The first guy we saw was apparently the middleman. He had absolutely no bedside manner and didn't even bother to read Thomas' reports before asking us why we were there. ???WHAT??? I kept asking him if he'd read the report and he said he had, but I was seriously ready to lose it on him when he finally read the report. Then he says "Oh yeah...that's a really thorough report". DUH! You would have known that if you had REALLY read it! Anyways...the head Neurologist comes in a short time later and does a few more neurological tests. He basically tells us what we've already heard before. That he's hanging on to some primitive reflexes and that he's "floppy". We should know more after the MRI and he wants to do yet ANOTHER Organic Acid panel (this would make #3) on him and have it sent to the lab at John Hopkins in Baltimore. They'll take all of the labs in the morning when he's out for the MRI. Okey dokey. We called the MRI sedation unit after the appointment and found out that Thomas couldn't wear anything with snaps or metal buttons or anything. Great. All of the clothes that I had brought for him were onsies with metal snaps. So now we had to figure out how to find him a shirt. Oh and we had somehow managed to lose his pacifier so we had to get one of those too. In DC. At night.
We make it back to our hotel and remember that our GPS thingy has a feature on it that finds nearby shops, restaraunts, etc. So we go get it and it leads us about a block away where there is a Ruby Tuesdays and a Burlington Coat Factory (which has a Baby Depot). Yaaaay! So...we walk a block and have dinner and buy a shirt and a pacifier. Come back and hit the hay, because we had to be back to WRAMC at 6:45ish.

Sedated MRI - Walter Reed Army Medical Center - Washington DC
Because the shuttle from the hotel begins running at 7am, we were going to have to figure out a different way to get to WRAMC. So we decide that because it's early enough, we're going to try to take our own car and get there at 6:30 and pray we find a spot. So we were up at 5:15, made it out the door, headed to Starbucks for some ridiculously-expensive-but-nonetheless-yummy-pick-me-up and head to the hospital which is only 2 miles away. We pulled in and while it was already quite full, we managed to find a spot within the first 10 seconds. Yaaaay!
We get there and because we were a little early we had to wait for the people to get there. They eventually did and let us back where we were given our own little bed for Thomas. They took all of his vitals and did a lot of paperwork. As I've mentioned before they had to sedate him. And when they went to go stick him for the IV, they only had to stick him ONE time! Woo Hoo! They were able to get his labs and then they gave him the juice to knock him out. He was soooo cute. But it was a tad bit unsettling to see him knocked out.


So we were able to sit in on his MRI. While they were wheeling him back to the room to recover, we grabbed some breakfast to take back with us. They let him wake up on his own so we waited a bit for that, but while we were waiting, the Neurologist came in and talked with us. He told us that overall, the MRI didn't show anything abnormal. The only thing remarkable about it was that the "white matter of the brain is on the lower end of normal development". He said he might want to re-do the MRI in a year to see where he is at that point. So...no news is good news?? Why doesn't it feel that way?

ENT - Fredericksburg, VA
So Eric managed to get an appointment for an ENT in Fredericksburg instead of waiting for another appointmet at WRAMC. He looked in both ears and said he might have seen some fluid behind the left ear. He happened to have an audiologist right there and she went ahead and did another otoemissions test and another tympanogram. Both came back within normal. Yaaay! He said there MIGHT be fluid behind the left one but nothing to worry about right now. Woo Hoo! Thank God for small miracles!

Gastro- part 2 - National Children's Hospital - Washington DC
Soooo...we took him back for his follow-up. He was 18pounds, 9 ounces!! Yaaay! So...she doesn't want us to change anything at this point, and we'll see her again in a couple of months when we'll discuss shifting him to regular milk.

Early Intervention - 1st Home Playdate
So the Occupational Therapist (OT) came and played with him and showed us some exercises we can do to strengthen his muscles so he can work on crawling and sitting up on his own. The first goal we have set with him is kind of silly but it's a good one I think. As I mentioned before, I want him to be able to take his first birthday cake in his little hands and smash it into his face and eat it! I want him to make an absolute mess and love every minute of it! So...to that end we're working on getting him to sit in his little bumbo with his tray and play with toys and pick up cookies and wagon wheel puffs and bring them to his mouth. Also...we weighed him here at home using the old "get on the scale with him and then get on the scal without him and subtract the difference" technique and he weighed somewhere's around 19 1/2 pounds this way! I know it's not 100% accurate, but it's got to be pretty close! I know he's gaining...that's the important thing. He's back on the growth chart!

Soooo....that was long, huh?? I've since talked with his nutritionist and she said that all of the labs that she has had drawn up came back normal for me. I'm not deficient. He came back normal on everything except Creatine and Iron. So...we're going to give him a little supplement for that right now. After some further discussion with her about how uncomfortable I am with "I don't know", given all of these other "signs" he has for there being something wrong, she talked with the Neurologist who agreed that maybe it's time for him to see a Neuro Geneticist. So we have a consult in for the one at National Children's Hospital in DC. Supposedly this lady is one of the best. I sure hope so. Or do I? Do I REALLY want her to find something?

Monday, February 4, 2008

Rules are Rules

I read a VERY interesting column on a website that is of interest to me this morning. In light of some things that have been going on with some friends, I found it VERY appropriate. While this column does relate to homeschooling (or rather unschooling homeschooling), it could also be appropriately applied in other situations. Situations whereby the blind application of rules and regulations without thought for the humans affected by such rules and regulations can negatively impact an entire community. Anyways...without getting too much into it, here's the link. Very interesting read!

http://www.homeschoolblogger.com/ChristianUnschooling/454356/

I promise I'll come back later and update on how Thomas is doing!

Edited: The link I previously posted for that column was NOT the right link...here's the right one...

http://www.christian-unschooling.com/rulesandregulations.html

OOPS