Yesterday Carson started getting sick. Nothing serious, just your run-of-the-mill common cold. Thankfully. He was sneezing and blowing his nose all afternoon and evening. It was different compared to other times my big guy has been sick. Carson was acutely aware of his symptoms and trying to process what each of them meant. He is growing up!
Sneezing - "I need to blow my nose."
Fever - "I'm hot Mom. Can I have some Tylenol?".
Lethargy - "Can we please snuggle on the couch with your super soft blanket Mom?".
Of course we can Carson. I would drop everything to get some snuggle time with my almost 6 year old first born. How could I ever say no? We snuggled up on my queen bed wrapped in the blanket my little sister gave me for my birthday. He let me run my fingers through his hair and hold him close. Anyone with an almost six year old boy knows that this was nothing sort of miraculous and a special treat for me. He fell asleep on my chest and I carried his cold ridden body to his bed and tucked him in. I hope today brings less illness but allows me to keep the snuggle time with my big guy.
Friday, April 24, 2009
Tuesday, April 14, 2009
I'm a soccer mom
It's official....I'm a soccer mom. Well, minus the mini-van. Carson started soccer off with a bang this evening. His club had a special "Soccer Rocks" night with the local professional soccer team. The kids were able to perform drills with four of the teams stars, get a fun t-shirt, and have an autograph session with the guys. Even though it poured and was about 50 degrees, all of the kids had a blast. Carson was in heaven and ran around like a free spirit. He was one of the few kids who had not actively played on a soccer team before but for the most part, you couldn't tell he was a newbie. The parents probably thought C-man was in the wrong age group because he was a head taller than all of the other kids but was in the middle of the 4-6 year age group.
Carson playing keep away with Gino!
Carson and Crew Cat
I was a typical proud mama on the field (which by the way was super cool to be out on in the middle of the giant stadium). I took video and pictures on my camera and cheered for my Carson. The players couldn't have been nicer. They truly enjoyed interacting with the kids. Carson especially like playing around with Gino because he played keep away with Carson and made him work for the ball. Overall it was an amazing opportunity and I'm glad we didn't stay home because of the rain. Carson is rearing to go for practice on Thursday. Wish him luck....their first game is this Saturday!
Video of one of the drills-- Carson is in the lime green t-shirt
Wednesday, April 08, 2009
Quick Catch-Up
Busy is not even the word for our lives lately. Things are going great and I can't complain. Eli's upper GI and abdominal u/s went better then expected. He does not have gallstones but his Nissen is still intact, loose, and NON-FUNCTIONING. He went for an endoscopy with biopsies last week and his stomach and duodenum took fabulous. His esophagus had mild irritation from his GERD and some bacteria growing on the top few layers of tissue samples. We will continue his current med regime and try to treat his reflux with adjusting pump feeds during the day and at night now on top of being maxed on meds. A repeat Nissen is something we want to avoid if possible due to the high probability of him not being able to eat orally again post-op. His GI and surgeon are in agreement with us and so we will see how things progress from here.


Carson is doing well also. I was able to go to his school for career week and speak to the kids in his class about neonatal nursing. Carson was excited to show me off and his classmates loved seeing the tiny preemie gear from Carson and Eli's NICU stays. I brought along a few stethoscopes for the kids to play with and you would have thought they were gold! It's hard to believe Carson is going to be finished with Kindergarten and getting ready for first grade. He is not a baby anymore and every day he is asserting his independence more and more. His teacher went on maternity leave about a month ago and the permanent sub is having trouble reading Carson's signs. This has brought on a few behavior issues at school and home from frustration but we are working it all out. His reading is skyrocketing and Carson is incredibly proud of his increasing knowledge. It is really fun to watch this stage of development.


I'm back to exercising and dieting. Ugggh. No fun at all but I feel out of shape. I started on the Jullian Michael's 30 Day Shred 9 days ago in addition to putting in my food intake in www.thedailyplate.com to track my eating habits. So far I feel stronger, more toned, and healthier and it hasn't even been two weeks. The boys think it's funny when I work out and they always want to try and exercise with me. Crazy little turkeys that they are.
Al is almost done with his LPN program and will graduate on June 20th. I can't tell you how proud of him I am. He has really taken his education seriously and fought for each A he has earned. Graduating with a 4.0 is almost in his reach! He also finally made good on his promise to me to quit dipping Coppenhagen. It has been tough but on 4/1 he stopped and hasn't had a dip since. :)
Well, this update grew into more then a "quick note" so I better get back to studying for my CCRN-NIC. I take my test on 5/21 and can't wait! Wish me luck.


Carson is doing well also. I was able to go to his school for career week and speak to the kids in his class about neonatal nursing. Carson was excited to show me off and his classmates loved seeing the tiny preemie gear from Carson and Eli's NICU stays. I brought along a few stethoscopes for the kids to play with and you would have thought they were gold! It's hard to believe Carson is going to be finished with Kindergarten and getting ready for first grade. He is not a baby anymore and every day he is asserting his independence more and more. His teacher went on maternity leave about a month ago and the permanent sub is having trouble reading Carson's signs. This has brought on a few behavior issues at school and home from frustration but we are working it all out. His reading is skyrocketing and Carson is incredibly proud of his increasing knowledge. It is really fun to watch this stage of development.

I'm back to exercising and dieting. Ugggh. No fun at all but I feel out of shape. I started on the Jullian Michael's 30 Day Shred 9 days ago in addition to putting in my food intake in www.thedailyplate.com to track my eating habits. So far I feel stronger, more toned, and healthier and it hasn't even been two weeks. The boys think it's funny when I work out and they always want to try and exercise with me. Crazy little turkeys that they are.
Al is almost done with his LPN program and will graduate on June 20th. I can't tell you how proud of him I am. He has really taken his education seriously and fought for each A he has earned. Graduating with a 4.0 is almost in his reach! He also finally made good on his promise to me to quit dipping Coppenhagen. It has been tough but on 4/1 he stopped and hasn't had a dip since. :)
Well, this update grew into more then a "quick note" so I better get back to studying for my CCRN-NIC. I take my test on 5/21 and can't wait! Wish me luck.
Wednesday, March 18, 2009
Nursing and the Economy
Browsing through blogs tonight I caught a post on http://realityrounds.com that really struck a cord. The author is also a NICU RN and her blog is quite interesting. I find that I agree with this post of hers and am irritated when people casually mention that they will "just become a nurse" so they can get a job right away because the economy is tough. GRRRRR.....it's frustrating! Thankfully I'm not the only RN feeling this way...
Do You Want to Make More Money? Become a Locksmith, or a Nurse!
Posted by realityrounds on March 6, 2009
The economy is in the tank, unemployment is at 8.1%, a 25 year high. There are 4.4 million unemployed, with countless others who are underemployed. So what are the media pundits solution? Become a nurse!
I have to admit, this rubs me the wrong way. It is a huge pet peeve of mine. I read quotes from CNN of a former real estate agent becoming a nurse because it is “a more stable job”. I hear the Governor of Michigan talking on “Meet the Press”, saying a solution for all the recently unemployed in the auto industry, is to retrain them in health care.
Yes, there is a nursing shortage that will only get worse because of the aging of the population. Yes, we need more nurses. But, no, we do not want people going into nursing because it is a “stable” job, or they are desperate for work. The media pundits make nursing out to be a job that any sucker can do.
Nursing, by the way, requires a college education. You cannot become a nurse through a Sally Struthers training catalog. “Do you want to make more money? How about a career as a locksmith, TV repairmen, or a nurse!” It takes two years to complete an Associates Degree in nursing, and four years for a Bachelors of Science degree in nursing. Hopefully, we will be out of this recession/depression in two years.
Please, do not apply for nursing unless you have the following qualifications:
A love for science and the scientific process
An academic mind, with good problem solving skills
A love of medicine, health and social sciences
A good attitude
Not minding long hours on your feet, working weekends and holidays, and off shifts
A genuine desire to help others maintain health, gain health and promote health
A desire to promote the image and professionalism of nursing.
It would be great to have a new pool of nursing candidates who can bring some of the above qualifications to the profession. But, please do not apply if the only reason you want to be a nurse is because you can’t find a better job. Just become a locksmith then!
RR
Do You Want to Make More Money? Become a Locksmith, or a Nurse!
Posted by realityrounds on March 6, 2009
The economy is in the tank, unemployment is at 8.1%, a 25 year high. There are 4.4 million unemployed, with countless others who are underemployed. So what are the media pundits solution? Become a nurse!
I have to admit, this rubs me the wrong way. It is a huge pet peeve of mine. I read quotes from CNN of a former real estate agent becoming a nurse because it is “a more stable job”. I hear the Governor of Michigan talking on “Meet the Press”, saying a solution for all the recently unemployed in the auto industry, is to retrain them in health care.
Yes, there is a nursing shortage that will only get worse because of the aging of the population. Yes, we need more nurses. But, no, we do not want people going into nursing because it is a “stable” job, or they are desperate for work. The media pundits make nursing out to be a job that any sucker can do.
Nursing, by the way, requires a college education. You cannot become a nurse through a Sally Struthers training catalog. “Do you want to make more money? How about a career as a locksmith, TV repairmen, or a nurse!” It takes two years to complete an Associates Degree in nursing, and four years for a Bachelors of Science degree in nursing. Hopefully, we will be out of this recession/depression in two years.
Please, do not apply for nursing unless you have the following qualifications:
A love for science and the scientific process
An academic mind, with good problem solving skills
A love of medicine, health and social sciences
A good attitude
Not minding long hours on your feet, working weekends and holidays, and off shifts
A genuine desire to help others maintain health, gain health and promote health
A desire to promote the image and professionalism of nursing.
It would be great to have a new pool of nursing candidates who can bring some of the above qualifications to the profession. But, please do not apply if the only reason you want to be a nurse is because you can’t find a better job. Just become a locksmith then!
RR
Thursday, March 12, 2009
The Week in Review
Is it only Thursday? This has been one week packed full of obligations and appointments. Sunday I worked my normal 12 hour shift and came home to a fabulous dinner prepared by my hubby. Monday morning I had coffee with my mom and caught up on the past week's events. After inhaling too much caffeine and sugar I headed back home to grab Carson off the bus and get Al and Eli in the car for appointment #1 of the day.
Carson had his routine check-up in the Behavior Clinic at Childrens at 1230. The appointment went quite well and his NP was pleased with his progress over the past three months. Al and I are quite happy with Carson's new skills in self control, calming techniques, and redirecting himself when he gets overstimulated. Carson was able to show off his intelligence a bit by reading and spelling all kinds of things and throwing a bit of math in the mix as well. He is such a fun kid. Growth over the past three months has been good and his new stats are 48.8" tall and 48lbs even. Not too shabby at all. No wonder everyone thinks he is 8 though!
Next Elias had his GI appointment at 315. We went over all of the symptoms he has been having over the past few months as well as his recent test results. His weight gain is poor but he is tall. New stats are 41.75" and 34lbs. He needs more weight on him. They ordered him a new feeding pump that he will be able to wear more comfortably during the day (the Zevex Entralite Infinity)- we have an old Zevex Entralite now that is bulkier and heavier. He is also going for an upper GI on Friday to make sure his Nissen fundoplication is truly undone. Our GI doesn't want to send him back to our surgeon for a re-do without a recent upper GI study showing it is undone. He is also getting an abdominal ultrasound on Friday to check for gallstones due to his recent severe right sided pain and clay colored stools. Hopefully that comes back negative. We will see where to go once the test results are in on Monday.
Tuesday was Eli's appointment with Phys Med where he officially received his cerebral palsy diagnosis. Spastic Diplegia. Right into his chart. It seems so permanent even though we have been living with it and talking about it for years. To have it be in black and white finally seems awkward. His doctor said that since his studies have shown no other reasoning for his chronic aspiration, it is linked to his CP and will most likely be permanent as well. That was a blow but we will deal with it. He is loving his AFOs and doing quite well with them. They are working his muscles and will say, "my legs are tired, can you carry me?". We won't do it but at least he is showing us that the braces are forcing him to use the correct muscles to walk and breaking that tone down.
Tuesday I was also supposed to meet some wonderful friends for lunch but woke up with a fever and feeling like someone hit me in the face with a baseball bat. Wednesday wasn't much better and Eli started feeling sick. Today is worse but I don't have a fever finally. End of winter colds are no fun at all. I thought I had escaped it but unfortunately the bug attacked me hard. We have gone through way too many tissues in our household this week!
So....there's the update for the week. Tomorrow we have testing but it's Friday(even if it is the 13th) so it has to be a good day. Thanks for reading if you got this far and sorry for the venting. :)
Carson had his routine check-up in the Behavior Clinic at Childrens at 1230. The appointment went quite well and his NP was pleased with his progress over the past three months. Al and I are quite happy with Carson's new skills in self control, calming techniques, and redirecting himself when he gets overstimulated. Carson was able to show off his intelligence a bit by reading and spelling all kinds of things and throwing a bit of math in the mix as well. He is such a fun kid. Growth over the past three months has been good and his new stats are 48.8" tall and 48lbs even. Not too shabby at all. No wonder everyone thinks he is 8 though!
Next Elias had his GI appointment at 315. We went over all of the symptoms he has been having over the past few months as well as his recent test results. His weight gain is poor but he is tall. New stats are 41.75" and 34lbs. He needs more weight on him. They ordered him a new feeding pump that he will be able to wear more comfortably during the day (the Zevex Entralite Infinity)- we have an old Zevex Entralite now that is bulkier and heavier. He is also going for an upper GI on Friday to make sure his Nissen fundoplication is truly undone. Our GI doesn't want to send him back to our surgeon for a re-do without a recent upper GI study showing it is undone. He is also getting an abdominal ultrasound on Friday to check for gallstones due to his recent severe right sided pain and clay colored stools. Hopefully that comes back negative. We will see where to go once the test results are in on Monday.
Tuesday was Eli's appointment with Phys Med where he officially received his cerebral palsy diagnosis. Spastic Diplegia. Right into his chart. It seems so permanent even though we have been living with it and talking about it for years. To have it be in black and white finally seems awkward. His doctor said that since his studies have shown no other reasoning for his chronic aspiration, it is linked to his CP and will most likely be permanent as well. That was a blow but we will deal with it. He is loving his AFOs and doing quite well with them. They are working his muscles and will say, "my legs are tired, can you carry me?". We won't do it but at least he is showing us that the braces are forcing him to use the correct muscles to walk and breaking that tone down.
Tuesday I was also supposed to meet some wonderful friends for lunch but woke up with a fever and feeling like someone hit me in the face with a baseball bat. Wednesday wasn't much better and Eli started feeling sick. Today is worse but I don't have a fever finally. End of winter colds are no fun at all. I thought I had escaped it but unfortunately the bug attacked me hard. We have gone through way too many tissues in our household this week!
So....there's the update for the week. Tomorrow we have testing but it's Friday(even if it is the 13th) so it has to be a good day. Thanks for reading if you got this far and sorry for the venting. :)
Saturday, March 07, 2009
Badges of Boyhood
Today was an unusual March day for Ohio weather. Over 70 degrees, windy, and perfect for two little boys to play all day outside. Carson and Elias spent the day riding bikes, flying kites, digging in dirt, and getting into mischief like every young boy should on a day like today. The two of them looked like they had taken a bath in the back of a dump truck and then spun around in a cement mixer for a few hours once nap time rolled around. Every small request from, "Can you please put your shoes on the steps?" to "It's time for nap now, head upstairs" was met with tears and spaghetti noodle limbs.
Awww...the moment you know as a parent that your children are beyond exhausted from playing their hearts out. When they fall to the floor into a pile of childhood flesh needing a good hug. This is what the beautiful day brought to our house this afternoon. Unfortunately it also brought a few reminders from their great adventures. Carson is now the proud owner of a gash on his elbow, upper arm, and forehead from racing on his bike AND tripping on the playground. Elias, not to be outdone by his older brother, decided he would take flight off of his bike too. His new nickname is Rudolph and he keeps asking when the skin on his nose is going to grow back.
A few scrapes, band aids, kisses, and hugs later all was well again at our house and the boys were off to dreamland. They both couldn't wait to show me their war wounds when I came home from work tonight. Their badges of boyhood.



Awww...the moment you know as a parent that your children are beyond exhausted from playing their hearts out. When they fall to the floor into a pile of childhood flesh needing a good hug. This is what the beautiful day brought to our house this afternoon. Unfortunately it also brought a few reminders from their great adventures. Carson is now the proud owner of a gash on his elbow, upper arm, and forehead from racing on his bike AND tripping on the playground. Elias, not to be outdone by his older brother, decided he would take flight off of his bike too. His new nickname is Rudolph and he keeps asking when the skin on his nose is going to grow back.
A few scrapes, band aids, kisses, and hugs later all was well again at our house and the boys were off to dreamland. They both couldn't wait to show me their war wounds when I came home from work tonight. Their badges of boyhood.
Monday, March 02, 2009
Trauma! Emergency! Practice?
My little sister's best friend is an EMS-basic student and invited Carson and Elias down to school for their pediatric assessment lab this week. The boys participated in training for assessments, C-spine, trauma skills, and vitals. They had a blast and ate up all of the attention. Thanks Brooke for thinking of us and including the boys in such a great activity. I'm glad we were able to help you guys out in learning pediatric assessment skills for the field.
Here are a few fun pics of our little trauma victims....


Here are a few fun pics of our little trauma victims....


Tuesday, February 24, 2009
Casting Day
Elias was casted for his AFOs today. The doctor was very nice and let Eli help with the entire process. He even gave Eli the left over plaster to take home and show Carson since there was only a tiny bit remaining on the roll. After looking through three pages of designs and colors over and over again, Elias finally decided on the blue ankle foot orthotics with the firetrucks, cars, airplanes, and street signs. They will come up the just under his knee and extend to his toes. The doctor was optimistic on the length of time Eli would need to wear his braces. He guessed that we would need them for 2-3 years depending on how well Eli responds. Let's hope that the wonderful doctor is correct and our little guy will be brace-free by 1st grade :) We should get them in around the 2nd week of March so I will post pics then.
Wednesday, February 18, 2009
Recap
What an incredibly hectic month packed full of cuddling, vacation, work, studying, hospital visits, craft time, cooking, and the occasional nap. We are all doing well and making it through the longest feeling but shortest hourly month of Ohio winters.

Carson spent ten days in Florida with my parents on vacation during the first half of February and came home with freckles dotting his nose and two scrapped knees. He built sand castles, visited the Kennedy Space Center, watched wild alligators, waved at the Disney cruise ships as they left port, and was spoiled rotten by Gigi and Bobpop. We missed him terribly and the house just wasn't the same without his quirky comments and big bright smile. Gigi took him on his first ever plane ride on the way home from Florida and even let Carson have the window seat. C said the houses looked like beetles and cars were like little ants on their way to the ant hill. What a fun kid!

Elias was lost without his big brother but was in turn spoiled rotten by Al and me. We had special dinner dates out, trips to the park when it was warm enough, and Al even took him to the movies one Sunday while I was at work. Eli finally started recognizing a couple of letters this month and we couldn't be happier. He is practicing writing his name over and over again. Sometimes you can tell it says "Eli" and other times we just tell him what a good job he is doing with all his hard work!

As for the medical update. His swallow study didn't turn out very well and he is definitely aspirating on thin liquids. We are back to thickening everything again and Eli is mad. He study also showed that he refluxes the entire bolus almost every time he swallows. That explains why he is refusing to eat more and more and we are back to using his feeding pump during the day again. We go to the GI soon to see what the new plan is. The bone density scan came back GREAT!! No osteoporosis or osteopenia so his foot break was just a fluke. He is getting casted for solid 90 degree AFOs (ankle foot orthodics) on Tuesday to help with his tone and CP. His MRI went fairly smoothly including the anesthesia and intubation. They ended using contrast after all since they saw some bright areas on the floor of his 4th ventricle and the foramen of Magnie. Thankfully the contrast showed no abnormal areas and the MRI was read as normal. Still no concrete answers but we will continue to treat his symptoms. If anyone has advice on AFOs I would love it. The great news is Eli's lungs seem to be doing awesome right now and he is running around causing havoc like every other almost 4 year old boy I know.

Al is in the thick of his final quarter of nursing school and working his tail off. His class schedule is insane going from 5-11 on Mondays through Fridays and then for 6 weeks on Saturdays for 6 hours each day! Ouch is all I can say. It will all be worth it in the end though when he has that license and can say he is a nurse. I am so proud of him and can't wait to see him walk across that stage.
Sorry for the lack of updates this month. As you can see we have been a bit busy with life but I will add pictures soon. I have tons of adorable shots of our two boys.

Carson spent ten days in Florida with my parents on vacation during the first half of February and came home with freckles dotting his nose and two scrapped knees. He built sand castles, visited the Kennedy Space Center, watched wild alligators, waved at the Disney cruise ships as they left port, and was spoiled rotten by Gigi and Bobpop. We missed him terribly and the house just wasn't the same without his quirky comments and big bright smile. Gigi took him on his first ever plane ride on the way home from Florida and even let Carson have the window seat. C said the houses looked like beetles and cars were like little ants on their way to the ant hill. What a fun kid!

Elias was lost without his big brother but was in turn spoiled rotten by Al and me. We had special dinner dates out, trips to the park when it was warm enough, and Al even took him to the movies one Sunday while I was at work. Eli finally started recognizing a couple of letters this month and we couldn't be happier. He is practicing writing his name over and over again. Sometimes you can tell it says "Eli" and other times we just tell him what a good job he is doing with all his hard work!
As for the medical update. His swallow study didn't turn out very well and he is definitely aspirating on thin liquids. We are back to thickening everything again and Eli is mad. He study also showed that he refluxes the entire bolus almost every time he swallows. That explains why he is refusing to eat more and more and we are back to using his feeding pump during the day again. We go to the GI soon to see what the new plan is. The bone density scan came back GREAT!! No osteoporosis or osteopenia so his foot break was just a fluke. He is getting casted for solid 90 degree AFOs (ankle foot orthodics) on Tuesday to help with his tone and CP. His MRI went fairly smoothly including the anesthesia and intubation. They ended using contrast after all since they saw some bright areas on the floor of his 4th ventricle and the foramen of Magnie. Thankfully the contrast showed no abnormal areas and the MRI was read as normal. Still no concrete answers but we will continue to treat his symptoms. If anyone has advice on AFOs I would love it. The great news is Eli's lungs seem to be doing awesome right now and he is running around causing havoc like every other almost 4 year old boy I know.

Al is in the thick of his final quarter of nursing school and working his tail off. His class schedule is insane going from 5-11 on Mondays through Fridays and then for 6 weeks on Saturdays for 6 hours each day! Ouch is all I can say. It will all be worth it in the end though when he has that license and can say he is a nurse. I am so proud of him and can't wait to see him walk across that stage.
Sorry for the lack of updates this month. As you can see we have been a bit busy with life but I will add pictures soon. I have tons of adorable shots of our two boys.
Wednesday, January 28, 2009
Snowday pictures
Today we had a big snowstorm. The boys didn't have school, I didn't have work, and Al's final was cancelled due to the weather. What was left to do??? Play of course!!
We made cinnamon rolls for breakfast along with yogurt and hot tea. The boys gobbled it up and asked for seconds. After gorging themselves the bounced off to play Legos. Carson sat and built creations with his new Lego set for hours today. He made a little dog and his owner. They needed a house and a dog house both with windows of course. The dog owner also needed a truck so Carson built one too. The Lego building was a blast and Carson was super proud of his architecture.
Eli wanted to make pictures with glitter glue. He gathered all of the glitter glue containers in the house and laid them out on the table. After picking up each color, shaking it to determine how much goo he could squirt out, and then organizing them by "prettiness", a masterpiece was created. Blue construction paper covered with piles of glitter glue layered the kitchen table. Elias was grinning from ear to ear with hints of silver and green glitter flecks across his lips and cheeks. I can only imagine how long it will take for his masterpiece to dry!
After lunch we had nap time. This always takes forever at our house but Al and I bribed the boys with time in the snow if they went to sleep. It worked and they were out cold in no time. Nap time ended and the snowsuits were pulled on. Carson and Eli looked like little stuffed piggies all bundled up for the cold. Al went outside and had a snowball fight with them and build a snow castle fort. Six rosey red cheeks later and everyone was inside eating homemade chili for dinner. My parents came over to eat and we had a great time. The boys watched Thomas' Snowy Surprise with some cherry cheesecake ice cream and hot tea for snack and then headed up to bed. What a great snowday!
MRIs, Uvulitis, Bone Density, and Fungus???
ACCKKKK!!! I don't think my brain can take anymore of this crazyness. In the past two weeks we have had more medical intervention than the past two months. I am stressed to the max and exhausted. It all started in the beginning of January when Eli broke out in a weird fungal rash all over his trunk and upper limbs. They took a culture but it somehow was lost in transit to Children's Hospital. He has been on grisefulvin (and antifungal) for 4 weeks now with 2 more left to go. The rash just now started to clear up a few days ago and we (as well as the doctors) were getting worried. They do not know why his immune system allowed him to have such a wide-spread fungal infection which is rare but he seems fine otherwise.
His physical medicine appointment was another story. Eli has been doing worse over the past few months in terms of his gross motor skills and swallowing. After he got his cast off Al and I immediately were worried about his gait and external hip rotation. He couldn't walk and when he did it was dragging his right leg behind him. Going down steps was a no go without one of us holding both hands or carrying him all the way down. Eli was falling a ton and kept saying his legs hurt in addition to his ankles being super tight. One night after bath I was putting lotion on him and he had extended clonus only on his right ankle which concerned me a great deal. I guess I was right because his phys med doctor was quite alarmed by his declining neuro status as well.
She ordered a bone density scan to make sure there is nothing wrong with his bones because he shouldn't have broken his 3rd metatarsal jumping on a matress. We had the scan on Monday and I will get the results this Friday. She also ordered an MRI of his brain and spine. It was supposed to be done on Monday right after his bone density scan but the anesthesiologist was concerned with his aspiration and respiratory compromise so it will now be done intubated and under general anesthesia on Monday Feb. 2. My poor baby has to be put under for yet another procedure. His doctor also ordered another swallow study to evaluate his dysphagia next Thursday the 5th. Cross your fingers for that one. Eli will be getting casted for AFOs in the coming weeks due to the decline in his gait and function of walking. I hope he pics out a pattern that he likes so we don't have to fight him to wear them!
With all of this going on I have been a mess. I hate having things pop back up from his NICU days. It has almost been 4 years since his scary arrival 15 weeks early and during times like these I hurt inside for the struggles he continues to face. We are unimaginably lucky and blessed with how unscathed Elias has been for a 25 weeker but neuro changes and g-tubes somehow eat at my soul when thinking of my rambunctious little man. It truly is a journey that we will get through together.
The uvulitis came into play with the only member of our household that seems to NEVER get sick....Al. He woke up at 3am yesterday choking and when he calmed down enough to let me look in his mouth, his uvula (the dangly thing in the back of your throat) was swollen to the width and length of his pinky!! We called my parents to come sit with the kids since they were sleeping and headed over to the ED. He got a steriod shot in his hip and put on oral steriods for the next five days. The ED doc said someone had to stay with him for 24 hours in case the swelling got worse and blocked his airway so I had to call off work :( Everything ended up okay though and he is now sitting next to me complaining about me still being on the computer!
His physical medicine appointment was another story. Eli has been doing worse over the past few months in terms of his gross motor skills and swallowing. After he got his cast off Al and I immediately were worried about his gait and external hip rotation. He couldn't walk and when he did it was dragging his right leg behind him. Going down steps was a no go without one of us holding both hands or carrying him all the way down. Eli was falling a ton and kept saying his legs hurt in addition to his ankles being super tight. One night after bath I was putting lotion on him and he had extended clonus only on his right ankle which concerned me a great deal. I guess I was right because his phys med doctor was quite alarmed by his declining neuro status as well.
She ordered a bone density scan to make sure there is nothing wrong with his bones because he shouldn't have broken his 3rd metatarsal jumping on a matress. We had the scan on Monday and I will get the results this Friday. She also ordered an MRI of his brain and spine. It was supposed to be done on Monday right after his bone density scan but the anesthesiologist was concerned with his aspiration and respiratory compromise so it will now be done intubated and under general anesthesia on Monday Feb. 2. My poor baby has to be put under for yet another procedure. His doctor also ordered another swallow study to evaluate his dysphagia next Thursday the 5th. Cross your fingers for that one. Eli will be getting casted for AFOs in the coming weeks due to the decline in his gait and function of walking. I hope he pics out a pattern that he likes so we don't have to fight him to wear them!
With all of this going on I have been a mess. I hate having things pop back up from his NICU days. It has almost been 4 years since his scary arrival 15 weeks early and during times like these I hurt inside for the struggles he continues to face. We are unimaginably lucky and blessed with how unscathed Elias has been for a 25 weeker but neuro changes and g-tubes somehow eat at my soul when thinking of my rambunctious little man. It truly is a journey that we will get through together.
The uvulitis came into play with the only member of our household that seems to NEVER get sick....Al. He woke up at 3am yesterday choking and when he calmed down enough to let me look in his mouth, his uvula (the dangly thing in the back of your throat) was swollen to the width and length of his pinky!! We called my parents to come sit with the kids since they were sleeping and headed over to the ED. He got a steriod shot in his hip and put on oral steriods for the next five days. The ED doc said someone had to stay with him for 24 hours in case the swelling got worse and blocked his airway so I had to call off work :( Everything ended up okay though and he is now sitting next to me complaining about me still being on the computer!
Thursday, January 22, 2009
Haircuts
The boys both got new haircuts this week. They were looking rather shaggy so it was time to break out the scissors and comb and trim those mops up! Carson and Eli sat still better than usual and then enjoyed a long bubble bath filled with their favorite bath toys. Check out the photo shoot from post-bathtime.


Tuesday, January 13, 2009
Cast Off

Today was the big day .... off with the cast!! Elias had his whole day planned out. He was going to school, eating lunch, playing with trucks, getting the "stinky green cast" off, then coming home for the longest bubble bath known to a preschooler. Thankfully that is exactly how the day went (with a trip to Starbucks for a treat thrown in after his ortho appt). The only unfortunate part to the entire day was when Eli tried to walk for the first time.
He simply could. not. do. it. ACKK! What were we going to do? He was crying because he was scared. I was nervous because of what a big set back this was in his muscle strength. Carson was worried about his little brother. And Al just wanted everyone to calm down and recollect. The ortho said it will take Elias awhile to get back to walking normally because he lost a lot of muscle mass in both legs on top of his underlying hypertonia and tight tendons. He basically has to relearn to stretch out that ankle and straighten out his hip and knee correctly again.
The poor thing is scared to walk not and gets very frustrated. He said the kids will make fun of him and call him a baby at school. He is doing a bit better after his bath and a good, long stretch. My God was his leg nasty! Al wouldn't even touch it. The skin was sloughing off and stunk to high heaven. He also has some reddened areas along his bony prominences from cast pressure that will need to heal. The xray looked great though and we don't have to see ortho again!! Back to full time physical therapy and adaptive physical education. YAY!
Saturday, January 10, 2009
Trip Around the World
Carson is learning about the World at school right now. His teacher is having them research a different continent each week and travel to a few new places that are found on that continent. They get to sample food common to each area as well as discover language, culture, dress, and environment. Carson is loving every minute and comes home on the bus each day with new facts bubbling out of his mouth. This week is North America week and they had a Ohio State day, Mexican feast, and on Thursday will be learning all about Hawaii. He gets to wear sunglasses, a beach hat, and a flowered shirt!
The first week back he made a craft globe with all of the continents drawn and painted on it. You could see the pride in his face when he pulled the colorful sphere out of his bookbag. His words of the week were North America, South America, Antarctica, Africa, Asia, and Australia. Carson sat down with his flash cards and nailed each word. Tuesday morning he couldn't wait to get on the bus and let his teacher know that he did his homework!
This time has been so an enjoyable experience for both Al and I. I cannot tell you how proud we are of our big guy. Carson is shining and soaking up all the knowledge he can get his growing hands on.
The first week back he made a craft globe with all of the continents drawn and painted on it. You could see the pride in his face when he pulled the colorful sphere out of his bookbag. His words of the week were North America, South America, Antarctica, Africa, Asia, and Australia. Carson sat down with his flash cards and nailed each word. Tuesday morning he couldn't wait to get on the bus and let his teacher know that he did his homework!
This time has been so an enjoyable experience for both Al and I. I cannot tell you how proud we are of our big guy. Carson is shining and soaking up all the knowledge he can get his growing hands on.
Tuesday, December 30, 2008
Late one night
Sunday, December 28, 2008
Thursday, December 25, 2008
Merry Christmas to All
I am not going to write a long drawn out post about each toy, book, funny comment, or argument the boys had over the four Christmas celebrations we had this year. There was so much joy and celebration in Carson and Elias' eyes and the magic of Christmas oozed from their beings this year. Each moment was filled with family and friends in addition to great food and fun. Thank you everyone for making this holiday season one of the best ever. Our family is truly blessed to be surrounded by such caring and loving people. Merry Christmas!






Tuesday, December 23, 2008
Ouch! Rearended...
Oh how I wish the roads were always dry and no one got into car accidents. We were on our way to TN this afternoon to celebrate Christmas. Unfortunately the weather about two hours into our drive decide to turn from windy to freezing rain and snow creating a lovely sheen across the highway. After slowing to a crawl (or about 25 mph) then hitting a bridge of solid ice and almost running under an 18 wheeler, Al saved our lives and corrected the slide and stopped the car in our own lane.
Whew. We were safe. We thought.
Five seconds later as I turned my head towards the back seat to make sure the boys were okay, an old Ford Ranger slammed into the back of us. Ouch! I shouldn't have done that. Thankfully Al and the boys are fine and I only have some fun whiplash to deal with. The cops were called but were only responding to non-injury accidents due to the number of severe accidents around the area. Crap. Exchange info, call insurance, calm the kiddos, oh...and ourselves too. Then we find out the guy who hit us has a MO license along with expired Arkansas plates!! But we were saved because he intelligently bought car insurance on December 10th. Whew.
Geico sent Enterprise out with a car to pick us up and a tow truck out to get Al's car to the shop. The entire back end will new replaced and maybe some frame straightening. Geico was wonderful and we can't say enough great things about them. We were set up in a rental car and our car was towed to the shop all within 35 minutes. The kids didn't get cranky and our rental was a brand new 2009 with less than 1000 miles on it. Everything has worked out until the weather got worse and we ended up in a hotel honeymoon suite with both kids for the night. We'll see TN in the morning once things settle down and we don't have to ice skate south.
Whew. We were safe. We thought.
Five seconds later as I turned my head towards the back seat to make sure the boys were okay, an old Ford Ranger slammed into the back of us. Ouch! I shouldn't have done that. Thankfully Al and the boys are fine and I only have some fun whiplash to deal with. The cops were called but were only responding to non-injury accidents due to the number of severe accidents around the area. Crap. Exchange info, call insurance, calm the kiddos, oh...and ourselves too. Then we find out the guy who hit us has a MO license along with expired Arkansas plates!! But we were saved because he intelligently bought car insurance on December 10th. Whew.
Geico sent Enterprise out with a car to pick us up and a tow truck out to get Al's car to the shop. The entire back end will new replaced and maybe some frame straightening. Geico was wonderful and we can't say enough great things about them. We were set up in a rental car and our car was towed to the shop all within 35 minutes. The kids didn't get cranky and our rental was a brand new 2009 with less than 1000 miles on it. Everything has worked out until the weather got worse and we ended up in a hotel honeymoon suite with both kids for the night. We'll see TN in the morning once things settle down and we don't have to ice skate south.
Friday, December 19, 2008
School Gifts
Today our loving boys each brought home a school made Christmas gift for us.
There is no material gift more special than getting presents created from the hands and love of your children. Unpacking the boxes to decorate the tree and house each year is always sentimental because of those painted wooden boxes or those beaded wreaths. Every item brings a memory and takes you right back to your child at that age. Carson and Elias added to our priceless collection today with two wonderful additions.
Carson's gift came first stuffed into a manila envelope covered in crayon writing and pictures. It said "To Mommy and Daddy. -- From Carson" He had a silly grin on his face and we could tell how proud he was of the contents inside. Al and I opened the envelope and inside was a beautiful clay wreath ornament hung with a nice red ribbon. On the back his name and the year were scratched into the clay with a toothpick so next year we can look back and remember this moment.


Elias came bearing a long tube shaped package wrapped in white paper painted with red and green splatters and tied with red ribbon at the ends. He kept saying, "Open it! Open it! I made it!". Inside was a wall hanging with green painted hand prints in the shape of a wreath along with fingerprint holly berries. It will hang next to Carson's reindeer wall hanging from a few years ago next Christmas season when we decorate once more.


I hope everyone out there with little kids is having fun with their handmade school gifts and enjoying the holidays with their little miracle. We certainly are.
There is no material gift more special than getting presents created from the hands and love of your children. Unpacking the boxes to decorate the tree and house each year is always sentimental because of those painted wooden boxes or those beaded wreaths. Every item brings a memory and takes you right back to your child at that age. Carson and Elias added to our priceless collection today with two wonderful additions.
Carson's gift came first stuffed into a manila envelope covered in crayon writing and pictures. It said "To Mommy and Daddy. -- From Carson" He had a silly grin on his face and we could tell how proud he was of the contents inside. Al and I opened the envelope and inside was a beautiful clay wreath ornament hung with a nice red ribbon. On the back his name and the year were scratched into the clay with a toothpick so next year we can look back and remember this moment.
Elias came bearing a long tube shaped package wrapped in white paper painted with red and green splatters and tied with red ribbon at the ends. He kept saying, "Open it! Open it! I made it!". Inside was a wall hanging with green painted hand prints in the shape of a wreath along with fingerprint holly berries. It will hang next to Carson's reindeer wall hanging from a few years ago next Christmas season when we decorate once more.
I hope everyone out there with little kids is having fun with their handmade school gifts and enjoying the holidays with their little miracle. We certainly are.
Thursday, December 18, 2008
We have Kittens!!
This morning our mama rat Storm gave birth to four bouncing baby rats. She has been waddling around for the past few weeks looking more and more uncomfortable and this morning we woke up to the sound of tiny squeaking. Little Miss Mama is busy nursing the babies, chowing down on everything we feed her with, and reorganizing her house. We congratulated Ghost on becoming a Daddy and he just looked at us like we were crazy. Perhaps we are but the boys sure got a kick out of it.
I'm betting half of you are trying to figure out why I titled my post "we have kittens" when I'm obviously writing about rats. Well.... I was bored the other day and Carson and I did a little research on pregnant rats and rat babies. We learned that a baby rats are called kittens. Isn't that funny? What irony for the rats. We need to wait a few weeks to name our new little ones and I can't wait to find out what namesakes Carson and Elias give our furry friends.
*******Post written on December 18th and pictures added December 26th*******


I'm betting half of you are trying to figure out why I titled my post "we have kittens" when I'm obviously writing about rats. Well.... I was bored the other day and Carson and I did a little research on pregnant rats and rat babies. We learned that a baby rats are called kittens. Isn't that funny? What irony for the rats. We need to wait a few weeks to name our new little ones and I can't wait to find out what namesakes Carson and Elias give our furry friends.
*******Post written on December 18th and pictures added December 26th*******
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