Tuesday, July 15, 2008
So I finished a beginning (read-VERY BASIC) photography course a couple of weeks ago. I took it just so I can learn all of the fancy photography lingo and act like I actually know something about it. Words like "aperture" and "bokeh". Have I impressed you yet? Now it's just a matter of taking hundreds of pictures only to delete probably 90% of them (mostly to delete the evidence that I still know nothing).
So I took some pictures at a friends wedding/vow renewal. I think they might have come out pretty decently. Either that or I'm delusional. Here's a link to the flickr album.
Friday, May 9, 2008
I think we have finally reached our first milestone! He’s sitting! Yaaaaay!
He’s averaging about 2 minutes up right now, with the longest stretch at about 5 minutes! He still doesn’t have that primary reflex that tells him to stick his hand out to catch himself. We’re working on that. But just for him to have the strength to keep himself upright is so exciting. He looks like a little boy. An independent little boy who no longer needs me. Ok…I know that’s stretching it, but up to now anytime he’s been upright he’s had to have someone there to hold him there.
Another milestone that we’ve reached in full force is babbling. Dadadadada and Mamamamama! YAAAY! I loooove to listen to him babble. And squeal. It’s adorable. It gives me such hope for him.
I feel like I should have more to say about this but really there aren't enough words.
So…we have another teenager in the house. Oooooo scary. I’ll have two teenagers in my home for one month and then I’ll be the mother of a twenty-something, a teenager, a pre-teen, a little kid and a baby. Wow. No wonder people think I’m a little weird.
So for Amanda’s 13th birthday she wanted to have a GNO. A little background here. I only do BIG parties on their 5th, 10th, and 15th birthdays (or 16th if they want to wait). So this was an “off” year for her. I gave her a $50 budget and said she could do with it what she wanted. She very carefully planned her evening (which turned into the next day as well). After AWANA she had her best friend and her sister over for the night. We rented the movie Aquamarine for $1. She had been wanting to see that movie for some time and was thrilled that it was so cheap! I already had popcorn here and let her have that. She bought 3 boxes of movie candy from Wal-Mart for .88 apiece and they ate that. I let her and her friends borrow my manicure supplies and they did mani-pedi’s. Then the next morning they feasted on homemade sticky buns that my girlfriend made for them and strawberries with whipped cream that Amanda paid for. Then we went shopping! I had to go to town anyways to do some shopping and we just incorporated that into a girls shopping day. When I went to the dollar store she spent 7 of her dollars on candy (ugh). Then she paid for all 4 of us to have lunch at Cici’s Pizza at their all-you-can-eat buffet for a total of $25. After some more shopping, she paid for ice cream sundaes from McD’s for $1 each. Then we found ourselves at Wal-Mart and she found a dress on clearance for $9 that was really cute on her. All-in-all she had a great day. We had cake and ice cream on her actual birthday a couple of days later.
I can’t believe she’s 13. Sigh. Where did it go?
Wednesday, February 6, 2008
"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
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...
Tuesday, January 8, 2008
I do this thing where I make a 3-D Teddy Bear cake just for the birthday boy and set it in front of him and let him tear into it.
It’s just small enough for a little guy to do some serious damage. And it’s incredibly adorable. I’m now coming to the realization that I may not get the pleasure of watching Thomas do this for his 1st birthday. And my heart hurts.
I know I just need to get over myself. He’s not going to do things when the others do them. It’s one of the harder things about being a member of the sorority that is the Stepford Moms. We’re mostly made up of moms of babies who were due in March 2007. It’s been a wonderful source for me. For friendship, for inspiration, for laughter. But also now for tears. It is sometimes difficult to watch from the sidelines while the others just pass you by. To rejoice watching a friends little one taking their first steps all the while not knowing if your little one will ever be able even crawl. In my heart I believe he will do these things eventually. I have to believe. It’s hope. Until some of these tests come back with answers, it’s all I’ve got.
Sunday, January 6, 2008
I’ve been joking with God recently. Hey…”Throw me a bone”! Um….I don’t think this is what I had in mind. But God has a sense of humor. And so do I, I’d like to think. So…this is what it looked like… The one on the left.
So I called the nurse at our clinic. She tells me to just have him elevate it and ice it and by the afternoon we should know if it’s something more serious than just a bruise. I did. And it didn’t get better. We hum and haw (and call nurse friends) all evening about whether or not to take him in. We finally decide that all they would end up doing for him is stabilize the foot and send him to an orthopedic Doc on Thursday. We wait for morning.
Morning comes. I call our clinic. They can’t (or won’t) get him in. We find an orthopedic Doc, but we don’t have our insurance information yet (new insurance) so we’d have to self pay and then submit a claim later. At this point we don’t care.
We take him in. They have me pay first. 220 smackeroos. Ouch. They X-ray his foot and take him right to the casting room (didn’t even bother with an exam room). The Doc comes in and confirms that in fact he broke the bone right above his big toe. He tells the casting girl what he wants and away she goes.
Matthew is really fine throughout this process….
She goes to wrap the casting material around and apparently when the glue activates it gets HOT warm. He did not like this but he tolerated it. When the Doc came in to examine the casting lady’s handiwork he decided that there was too much cast extending beyond his toes and asked her to cut some off. She grabs the tool that they use to cut casts off and starts it up. This thing looks (and sounds) scary to ME. She gets about ½ way through cutting off the top of the cast and Matthew starts FLIPPING OUT. I thought for sure that she’d cut him with the way he was flipping out. The Doc comes in and checks everything out and clears him to leave. He’s still screaming. IT HURTS WORSER THAN BEFORE!!!
I carry him out to the truck. Still screaming. He’s more upset than I think I’ve EVER seen him. Even when he had surgery to remove his tonsils and put tubes in his ears. I take him back in and tell them that I’d like them to take a second look at the cast and see if everything is ok. They take him back and the Doc comes in and looks at everything and says that we just need to take him home and give him some Tylenol with Codeine which they had given me a prescription for. OK.
I take him BACK out to the truck (stillllllllll screaming..hasn’t stopped) and we drive about a mile to the drive-thru at CVS to drop off the script. I get half way through a line of about 6 cars when I look down at the script and realize that they’ve written RYAN (last name here) on the script. RYAN??? Ugh. I’m on the phone with Hubby at the time and ask him if he wouldn’t mind calling the Doc back and asking them to write me a new script with MATTHEW’s name on it and have it ready to pick up.
I drive BACK to the Doc’s office (Matthew’s still screaming…..) and while I’m waiting for them to get it the girl that cast him and wrote the script apologizes for the mistake. I’m in tears at this point and she has the nerve to admonish me for crying because I’m just going to upset him even more. I’d really like to murder this nurse right about now.
So I get the right script, go BACK through the line and drop it off. Eric agrees to pick it up on his way home from work. Yay for small miracles. I know I have liquid Tylenol with Codeine at home so I make up my mind to just get him home and get him drugged medicated so he will shut up feel better. Amanda calls me at this point and reminds me that I could go through the McDonalds drive-thru for dinner. Perfect. I pull into the McD’s drive-thru line and ask the STILL SCREAMING Matthew if he wants anything and he SCREAMS says no. I decide that I can get Mc’D’s AFTER I’ve drugged him gotten him comfortable at home, so I pull out of the line and head to the road for the 25 mile trip back home.
He screamed the WHOLE WAY HOME. We pull up in the driveway and I get out of the truck to go around to get him and open the door. He quietly asks me if I’m going to carry him. He had stopped screaming. ????????????? Seriously?????????? I wanted to kill him. I had begged with him all the way home to calm down and stop screaming. I had reminded him to breathe. I told him how sorry I was that he was in soooo much pain. I felt his pain. And all along he could have probably controlled it???? ARRRRRRRRRRGH!!!!!! WAAAAAAAAAAAAH!
Anyways….he’s doing well. He’s on crutches and I’m making him use them. I refuse to carry this child everywhere. I think that this experience will make him stronger. I pray it will have the same effect on me as well.
This is what she saw...
Sooooo…now we have to go see an ENT to figure out why. More often than not a flat tympanogram means that there is fluid trapped in the middle ear. Sometimes it can mean other things. Like a tumor. Which I had in MY ear. But I’m not going to go there. If it’s fluid, it could conceiveably be causing him not to hear correctly and in turn it could also be connected to his not babbling. That would be much more “fixable” than the alternative reason for his not babbling. I could handle that.
Friday, December 21, 2007
After Hubby's last appointment, the doc told him to stop taking the Abilify. So he did. Cold turkey. I thought everyone knew that you can't simply stop taking major anti-depressants without weaning off of them first, especially considering the fact that he's been taking this particular med. somewhere in the area of 3 years. Needless to say he started to experience some...well...feelings! And he started to show that he was feeling. He became more playful. Talkative. But then he also became sad. And ANGRY.
We had a big fight the other night over something reeeeeally stupid. He says I didn't give him a kiss goodnight from the night before. I have absolutely no recollection of this. He claims that I did it intentionally because I was mad at him. Yes, I was mad at him. I told him I was a little bit mad at him because earlier Sunday evening he asked me to make a decision for him and I wouldn't and he threw a bit of a temper tantrum about it. And didn't apologize. So...I was a bit miffed. Nothing over the top. I would have got over it eventually. But I'm one that tells it like it is. So I did express to him that I was still a bit mad at him over all of that. He took that and decided that I was so mad at him that I wouldn't give him a kiss goodnight. So he was upset about that. Then when he laid down to go to sleep he couldn't and part of the reason was that he was hot. He claims that somebody turned the heat up. The fact of the matter is that nobody turned it up any further than it normally is turned up (72-btw). But somehow this was unacceptable, too. There was a bunch of other petty little things too, but the point is...this is NOT like him. He does NOT let little petty things like this normally get to him.
So we're discussing his behavior a couple of days later and he informs me that he ran out of the Effexor and didn't re-fill it and had stopped taking it cold turkey as well. OH GEEEZ. No wonder! Now all of his behavior makes complete sense to me. It's not easy to deal with, but at least it make sense. I called his Neuro. Doc. when we got home and had him call us back so that he would be aware of what is going on (and to get some advice on how to deal with him). I had to leave a message, but the Doc himself did call back at 9. Geez. Why 9. After Hubby was supposed to already be in bed. He talked to Eric and told him that he couldn't just stop taking those meds. DUH! He called in a re-fill and he began taking the Effexor again this evening.
That's just a band-aid. He sees him again on the 27th. We need to figure out why he was put on these stupid medications to begin with and ask him exactly how this is helping treat his insomnia.
UGH. Ok...vent over.
Thursday, December 20, 2007
So....Supermom has left the building. That was the title of a bible devotion that I read recently. I've been called Supermom a lot recently, both in the cyber-world and IRL (in real life for those not privy to cyber-lingo). I feel that I am truly unworthy of this title. Those that have called me that have probably given me that title based on the fact that I have 5 children. And I homeschool. And my hubby has medical issues that leave me having to deal with many things without his support or involvment. And frankly, I'm probably not doing any one of those things as well as I would like. I'm often impatient. Selfish. Lazy. Whiny. Those are words that I would use to describe me. Not Super. And even as I type this, I realize that self-loathing is not a "super" quality either. Sigh. Can't win for trying. So...in an effort to not be "perfect" I'm going to quit this first entry (journal, blog, whatev..) and come back later. In one of those moments when I am tempted to talk to myself out loud.