Hopefully complete seizure control.
Hopefully many new and exciting developmental milestones; walking, talking, self-feeding.
Hopefully a new healthy baby brother or sister.
Some pictures from that day a year ago;
09/07/26
3 days ago
Monday, August 31, 2009
Seizures, a year later...
A little over a year ago, we started on a new and unexpected journey as a family. Lincoln had his first EEG, and it was confirmed that he was having seizures. At that time there was so much fear and stress. It would have been nice to be able to flash ahead a year, and see how wonderful our little boy is, and how well we all have weathered this journey, so far. I wonder what the next year will bring...
Hopefully complete seizure control.
Hopefully many new and exciting developmental milestones; walking, talking, self-feeding.
Hopefully a new healthy baby brother or sister.
Some pictures from that day a year ago;
Hopefully complete seizure control.
Hopefully many new and exciting developmental milestones; walking, talking, self-feeding.
Hopefully a new healthy baby brother or sister.
Some pictures from that day a year ago;
Tuesday, August 25, 2009
I hate Labor Day.
It is the worst holiday ever in my opinion. For as long as I can remember, Labor Day symbolized the end of summer and the return of school. We would often go to the Oregon State Fair on Labor Day because it was 1/2 price day. It was 1/2 price because it was the last day of the fair, and many of the displays were looking pretty darn forlorn after being up 2-2.5 weeks. This was how Labor Day made me feel. Forlorn and perhaps depressed even.
For a brief time during college, Labor Day meant nothing to me, since school didn't start until the end of September. I will always look back on those few Labor Day's with fondness. Now I face Labor Day with much less than fondness, and much more than depression. I would describe my feelings as fear and trepidation...
Two years ago, the day after Labor Day, 9/4/07, we went to our 18 week appointment with the midwives, and they could not find the heartbeat. They sent us for an ultrasound the following day, 9/5/07, where it was confirmed that our baby had passed away. On 9/7/07, I had a D&C surgical procedure to remove our baby and get genetic testing done. On 9/17/07 I had my surgical follow up appointment. Nothing of note happened that day, except it is just another date that is stuck in my mind regarding the miscarriage. Genetic testing came back telling us that the baby was a boy and that it had a ringed 18th chromosome which caused his death. At that point in time, I had thought that the overnight wait for the confirmation ultrasound from 9/4/07-9/5/07 was the worst night of my life. Little did I know what the following year would bring...
Last year, the Friday before Labor Day weekend, on 8/28/08, we got confirmation that our little 5 week old baby Lincoln was having seizures. On 9/15/08 we went to the hospital for an overnight EEG to determine if these seizures were Infantile Spasms. That night is now on record as the worst night of my life. On 9/16/08 we were told that he was having Infantile Spasms, and that these are very very serious form of seizure. On 9/17/08 we had his first MRI which gave us the diagnosis of Tuberous Sclerosis, and changed our lives forever.
This Thursday, 8/27/09, we will be doing Linc's cardiac Holter monitor study. We will be getting the results of this study around 9/17/09. Also, the day after Labor Day, on 9/8/09, we will be doing the CVS test on the new baby. This test carries a risk of infection and miscarriage, as well as the results of this test having a huge impact on how we proceed from here on out. We will be getting these results around 9/17/09 as well. It seems as if we are just asking for history to repeat itself with the timing of these significant and life altering tests, huh?
I am working hard to control my nervousness and superstition. Afterall, these are just days, and they have no more power or meaning than any othe days, right? I am hoping with all of my might, that history does not repeat itself, and Labor Day does not continue to provide us with bad news and life changing events. Please, please, please...let this year break the trend. I will never love Labor Day, but if all of the testing comes back good with no complications, then maybe I won't dread it quite so much next year.
For a brief time during college, Labor Day meant nothing to me, since school didn't start until the end of September. I will always look back on those few Labor Day's with fondness. Now I face Labor Day with much less than fondness, and much more than depression. I would describe my feelings as fear and trepidation...
Two years ago, the day after Labor Day, 9/4/07, we went to our 18 week appointment with the midwives, and they could not find the heartbeat. They sent us for an ultrasound the following day, 9/5/07, where it was confirmed that our baby had passed away. On 9/7/07, I had a D&C surgical procedure to remove our baby and get genetic testing done. On 9/17/07 I had my surgical follow up appointment. Nothing of note happened that day, except it is just another date that is stuck in my mind regarding the miscarriage. Genetic testing came back telling us that the baby was a boy and that it had a ringed 18th chromosome which caused his death. At that point in time, I had thought that the overnight wait for the confirmation ultrasound from 9/4/07-9/5/07 was the worst night of my life. Little did I know what the following year would bring...
Last year, the Friday before Labor Day weekend, on 8/28/08, we got confirmation that our little 5 week old baby Lincoln was having seizures. On 9/15/08 we went to the hospital for an overnight EEG to determine if these seizures were Infantile Spasms. That night is now on record as the worst night of my life. On 9/16/08 we were told that he was having Infantile Spasms, and that these are very very serious form of seizure. On 9/17/08 we had his first MRI which gave us the diagnosis of Tuberous Sclerosis, and changed our lives forever.
This Thursday, 8/27/09, we will be doing Linc's cardiac Holter monitor study. We will be getting the results of this study around 9/17/09. Also, the day after Labor Day, on 9/8/09, we will be doing the CVS test on the new baby. This test carries a risk of infection and miscarriage, as well as the results of this test having a huge impact on how we proceed from here on out. We will be getting these results around 9/17/09 as well. It seems as if we are just asking for history to repeat itself with the timing of these significant and life altering tests, huh?
I am working hard to control my nervousness and superstition. Afterall, these are just days, and they have no more power or meaning than any othe days, right? I am hoping with all of my might, that history does not repeat itself, and Labor Day does not continue to provide us with bad news and life changing events. Please, please, please...let this year break the trend. I will never love Labor Day, but if all of the testing comes back good with no complications, then maybe I won't dread it quite so much next year.
Monday, August 24, 2009
Spider Cave
Here are some pics from Spider Cave. The tour was billed as an off-trail, extremely strenuous, 3-dimensional caving adventure. And it was! It started out with us getting the gear, and verbally signing our lives away. Jennifer almost chickened out at this point, but we convinced her, and the guides, that she really did want to go.
The gear.
The tour started with us going down a 1/2 mile trail, into a dry wash, then climbing down a 7' ladder in a hole in the ground. Then came the hardest, and least fun part of the tour (in my opinion)...the belly crawl... I have done belly crawls in the past...but never ones this long, with no break were you can do no more than lift your head. At points you would actually have to turn your head sideways to get the helmet through the opening. It was tough, and the next day I was covered in bruises on my forearms, shins, thighs, and hips, as were my sisters. I am not sure about Andy, but then he wouldn't show me any piddly bruises, even if he had them. There were either 3 or 4 of these very tight squeezes, seperated by about 4 feet of a little wider tunnel. In one of these tunnels I had the chance to pause and look around (while lying on my belly in the gravel), and I noticed the reason that the cave got its name. Now, when booking the tour I just figured that the name was most likely due to a formation, or possibly the shape of the cave itself. If you know me at all, you know of my fear of spiders. Well, while lying in the gravel on my belly, in a tube of rock barely big enough to fit an adult human, with Jennifer's feet sticking out a the next tight squeeze ahead of me, ans someone else from the tour right behind me...I noticed 4 giant, the-size-of-my-hand daddy longlegs. I did feel a little paniced, but there was nothing I could do but try to stay a low as possible and hope the giant things wouldn't fall on me as I went through the squeeze. I also dreaded returning through that same tunnel the entire 2 hours we were in the Spider Cave.
The belly crawl. Look how releaved I am to be getting out of that spider tunnel.
The formations. Calcite flowstone with iron staining.
Columns. Called "The Untouchables". To keep people from touching them. Although they are strong enough to support the weight of the average human, in this wet part of the cave, the formations are still growing ("alive"), and touching them leaves behind dirt, oils, and lint that can "kill" them.
The high water mark, several feet above our heads, in the "Mace Room".
White calcite stalagtites and columns.
Argonite bundles.
Very fragile calcite columns with argonite bundles growing on them. The surrounding red soil is from the iron. Most of the cave was pretty red, so the bright white calcite formations really popped!
The very narrow columns are often called soda straws. They are usually hollow inside, and are about the diameter of an actual soda straw.
The gear.
The tour started with us going down a 1/2 mile trail, into a dry wash, then climbing down a 7' ladder in a hole in the ground. Then came the hardest, and least fun part of the tour (in my opinion)...the belly crawl... I have done belly crawls in the past...but never ones this long, with no break were you can do no more than lift your head. At points you would actually have to turn your head sideways to get the helmet through the opening. It was tough, and the next day I was covered in bruises on my forearms, shins, thighs, and hips, as were my sisters. I am not sure about Andy, but then he wouldn't show me any piddly bruises, even if he had them. There were either 3 or 4 of these very tight squeezes, seperated by about 4 feet of a little wider tunnel. In one of these tunnels I had the chance to pause and look around (while lying on my belly in the gravel), and I noticed the reason that the cave got its name. Now, when booking the tour I just figured that the name was most likely due to a formation, or possibly the shape of the cave itself. If you know me at all, you know of my fear of spiders. Well, while lying in the gravel on my belly, in a tube of rock barely big enough to fit an adult human, with Jennifer's feet sticking out a the next tight squeeze ahead of me, ans someone else from the tour right behind me...I noticed 4 giant, the-size-of-my-hand daddy longlegs. I did feel a little paniced, but there was nothing I could do but try to stay a low as possible and hope the giant things wouldn't fall on me as I went through the squeeze. I also dreaded returning through that same tunnel the entire 2 hours we were in the Spider Cave.
The belly crawl. Look how releaved I am to be getting out of that spider tunnel.
The formations. Calcite flowstone with iron staining.
Columns. Called "The Untouchables". To keep people from touching them. Although they are strong enough to support the weight of the average human, in this wet part of the cave, the formations are still growing ("alive"), and touching them leaves behind dirt, oils, and lint that can "kill" them.
The high water mark, several feet above our heads, in the "Mace Room".
White calcite stalagtites and columns.
Argonite bundles.
Very fragile calcite columns with argonite bundles growing on them. The surrounding red soil is from the iron. Most of the cave was pretty red, so the bright white calcite formations really popped!
The very narrow columns are often called soda straws. They are usually hollow inside, and are about the diameter of an actual soda straw.
The gnome. No, not me, the formation.
Coming back out into the light!
The end!
Friday, August 21, 2009
Cardiac Holter Monitor
I know I promised a post about Spider Cave, but something more important came up in the mean time. Today Linc had his 3rd ever cardiologist appt. The other 2 previous appts consisted only of a heart u/s looking for Rhabdomyomas. They did another u/s this time, which still showed a perfectly normal looking heart. However, this was the first time they did an EKG, and it showed some premature ventricular contractions. Normal people get these a couple of times per day. Linc had 2 in 5 minutes. The doctor said that this could just be normal for him, or it could be a microscopic tuber in his heart that is sending out extra electrical currents, basically causing seizure activity in his heart.
Next week we will be doing a 24 hour Holter monitor study to see if he has any runs of these premature ventricular contractions. If he does, we will be adding a cardiac medicine to his regime of anti-seizure meds. This would make a total of 4-5 medications, given 2 times each day. Not the worst thing, but definitely not something I am hoping for. I hate needing to drug him up so much. I don't even know what he is like without the meds, because he has been on at least 1 med. since he was 5 weeks old.
Ugh. We would love to catch a break here. Our little guy sure deserves one. It would be great if you can spare any good thoughts for him. Thanks!
Wednesday, August 19, 2009
Carlsbad Caverns
This past weekend we headed from Tucson, AZ to Carlsbad Caverns National Park, NM. It was about an 8 hour drive without any long stops...but we goofed around on the way out of Arizona, so it took us about an hour longer than it should have to get there! Lincoln did great on the car drive again, and slept most of the way there. We spent Friday driving to the park, Saturday we (Jamie, Jennifer, Mom, Andy & I) went on a lantern tour in left-hand tunnel. It was interesting, but I doubt I would do it again. I was glad that it was only $7/person. Well worth that amount of money. Later that afternoon we went into the main cavern on the self-guided tour. It was free-admittance weekend, so the main caverns entrance was free. We went down the "natural" entrance walk. It is so awe inspiring! See pictures below of our Saturday afternoon!
We all had a great time in the main caverns at Carlsbad Caverns National Park. It was nice and cool and dark, and was full of huge beautiful formations. The cavern itself was gigantic and awesome! Lincoln had a great time, but was definitely tuckered out by the end.
In the next couple of days I will add a post about our off-trail tour/cave scramble in the Spider Cave last Sunday!
Wednesday, August 5, 2009
Big news
The big news is: we are pregnant again!! Andy and I found out the day after Lincoln turned 1 year old! We had decided to wait to see a heartbeat before announcing it to anyone because of what happened the last time in April. And following some scary spotting earlier this week, that made waiting to tell seem like great idea. Fearing another miscarriage, I headed to the doctor today. Well, I am thrilled to say, that Baby Blatchford was measuring right on track at almost 6 weeks of gestational age, and already had a beautiful little heartbeat!
We go back for another heartbeat check in almost exactly 2 weeks. If everything looks good there, then we will have the CVS testing done in September to make sure that the new baby doesn't have TSC, like Lincoln, or any other major genetic problems, like our first miscarriage. If we make it through September, it is much more likely (although never certain) that we will be going all the way with this one. We will keep you updated, good or bad!!
We go back for another heartbeat check in almost exactly 2 weeks. If everything looks good there, then we will have the CVS testing done in September to make sure that the new baby doesn't have TSC, like Lincoln, or any other major genetic problems, like our first miscarriage. If we make it through September, it is much more likely (although never certain) that we will be going all the way with this one. We will keep you updated, good or bad!!
Friday, July 31, 2009
What a difference a year makes...
Direct comparison #1
(Yes, he did fall asleep in his highchair. Apparently, mommy was taking too long making his waffle...)
Video comparisons:
Direct comparison #2:
Direct comparison #3:
(Yes, he did fall asleep in his highchair. Apparently, mommy was taking too long making his waffle...)
Video comparisons:
Linc's "crazy eyes" that he used to make while being burped.
Linc's "baby squats", while he works on the pulling up/standing/cruising/walking skills.
From his average 7lbs 8.5oz, and rather short 19.25 inches at birth, all the way to his "off-the-charts" 30lbs 4oz, and 33 inches. He has definitely chunked up, grown taller, and even cuter in our opinion! It has been a long, eventful, but wonderful year with our little man, Lincoln. I hope that this next year is even better!
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