My Little Landen
Wednesday, February 9, 2011
OT Evaluation
So today was Landen's occupational therapy evaluation. Next time I won't schedule it for so early in the morning! It was at 8:30 but I had to run Brayden to my mother-in-laws and drive to Kingman which meant getting up at 6:30AM!!! Since I get up at 7 usually you'd think 6:30 wouldn't be to bad but for some reason IT WAS!!! Maybe it was just a bad night's sleep? Anyway first thing I LOVED THE OCCUPATIONAL THERAPIST!!! She was so good with Landen he didn't even have to warm up to her he just loved her right away. I take Landen to a lot of doctors and specialists and for the most part they have been wonderful but there is a few that have been EXCEPTIONAL and this lady is one of them! For those of you who don't know what occupational therapy is let me explain... I had some one ask me why Landen needed OT if he doesn't have a job. He does his job is to play, learn and grow. For him OT will deal with some of the more fine motor skills, skills that are needed every day in life. For a kid like Landen that is things like feeding, playing, dressing and other self help skills. Anyway as I said Landen loved her and had so much fun playing with her... that's usually how and evaluation goes they play with them and watch for skills or areas of concern.... she was very well informed and helpful. Her and Landen will be working on fine motor skills focusing on building strength and play skills (the best kind of skills to have :D ) Later we will tackle some of the harder fine motor skills like using a spoon.
Tuesday, February 8, 2011
PT Evaluation
So today was our trip to Kingman for Physical Therapy (PT) evaluation so that Landen can start PT next week. Tomorrow will be Occupational Therapy (OT) next week will be Speech Therapy (ST). So my obstinate little boy (he gets that from his Aunt Susie by the way, yes these things are passed from Roommate to Roommate's child genetically :D Guess what Becka got from me ;) Anyway my obstinate Little Landen decided he didn't want to be evaluated today and when the therapist came in he got off my lap and sort of "fell" into her lap then laid limp as a wash cloth on the ground... why??? I don't know!!! He just sat there rubbing his arms up and down the mat not even lifting them and humming like he does when he is happy. He wouldn't even lift his head for her... THE LITTLE TURKEY!!! He was just trying to make his mommy look silly for bragging about how well he crawled and how much he tried to walk. It was fifteen or twenty minutes he just laid there... she started asking me things like can he lift his head, can he roll over, can he sit on his own... All thing he can do really well. Luckily he finally decided to get up off the floor and play... She did a good job Landen was a little shy around her but eventually decided to like her. She helped him try to walk with a walker (a skill they will be working on together) and assessed his muscle strength and range of motion. I would have loved to have someone here in town available for him but I think they will be able to help him lots! By the end of the apointment he was having so much fun crawling all over the big room and exploring the many neat things they keep in there to help other kids. Now that he is familiar with the place lets hope he will do better tomorrow!!!
Tuesday, February 1, 2011
February Already?!?!
Wow January h
as come and gone and we are well into 2011 can you believe it? It was a month full of grumpiness and sickness for our family although we did manage to have fun! Scott was the first to get sick then Brayden and Landen. I thought I had been saved when a week later I got sick and then Scott got it again and is still trying to get over it!
We celebrated Christmas at the beginning of the month (before the sickness
) we were apart for the real one and wanted to share the boys Christmas together. It was a really nice day! We just hung out all day had Pizza and movies and lots of presents!! It was a nice day to just be together as our little family. Brayden was really good at opening presents... Landen... well... Landen was good at throwing them!!! Good thing Santa didn't get him anything fragile or expensive! They were both spoiled new clothes and toys and EXTRA SNUGLY PJ's that I made for them. This was a Christm
as more for mom then the boys! It was Brayden's first Christmas which makes it memorable. It has only been a couple of months since we learned what is wrong with Landen and until that moment it had never occurred to us that we have a limited number of Christmases with our precious child. It is important to us to make the most of our time even if the boys are too young to remember all the activities we want to enjoy EVERYTHING!
We spent a weekend up in the mountains fo
r my birthday unfortunately both the boys were sick and puking but we did manage to get out side a little bit. I managed to get the car stuck on a STUPID rock when I slid off the driveway running to Walgreen's to get Tylenol for the boys. The rangers came looked at our 
car and told us they would have to think about how to get us out... they never returned. Took us two trucks and five really nice people to get us out!!! But we did have fun. Landen loved sledding for a little while while he was feeling good. We spent most of the weekend snuggled up with a nice fire and cozy blankets sleeping!
Both Little Landen and Baby Brayden got new teeth this month... This is Brayden's first and Landen's 15th!!! Not fun having both babies teeth at the same time! But we made it
through only to have Brayden get his nine month shots and get grumpy all over again! Grumpiness is contagious!! But we have survived sickness were weren't going to give up just because of a couple teeth and a flu shot!! I'm glad to report that although Scott is still sick they babies are back to their happy and destructive selves and Mommy as usual is too busy to be either sick or grumpy!
Landen did have some blood work done this month nothing to big just checking some liver functions and other things. Landen's liver is slightly enlarged nothing to be too concerned over in a normal child. But with Landen they just wanted to make sure that it was functioning
properly. Both the boys had checkups with the doctor Brayden is getting so big weighing in 17 lbs 11 oz and measuring 23 inches long... yes he is short and small for his age but when your Mommy hasn't even reached 5 feet you shouldn't expect to be too tall! Little Landen gave me the most surprise after going 18 months THAT'S A YEAR AND A HALF only gaining one pound and 2 inches the little turkey gained almost 1.5 pounds and 2 inches in six months weighing in at 22 lbs and 32 inches... yes he is still very small for a two and a half year old but we work so hard for our pounds and inches with 
Landen that we celebrate every gain (we should start celebrating with cake so that he can gain even more!! Prompting us to celebrate again with another cake... it would be an endless joyful cycle of happiness and
cake!!)
Thank goodness after 9 months Landen has decided that Brother is here to stay.... not to say he likes it but he is becoming more tolerant of brother and less likely to hit him for coming to close. The fights are now minimal only when they are tired or Brayden is trying to eat Landen's toes (which he does often). They are even playing together... well near each other... on occasion....
We look forward to February and what it holds... hopefully no more sickness!
as come and gone and we are well into 2011 can you believe it? It was a month full of grumpiness and sickness for our family although we did manage to have fun! Scott was the first to get sick then Brayden and Landen. I thought I had been saved when a week later I got sick and then Scott got it again and is still trying to get over it!We celebrated Christmas at the beginning of the month (before the sickness
) we were apart for the real one and wanted to share the boys Christmas together. It was a really nice day! We just hung out all day had Pizza and movies and lots of presents!! It was a nice day to just be together as our little family. Brayden was really good at opening presents... Landen... well... Landen was good at throwing them!!! Good thing Santa didn't get him anything fragile or expensive! They were both spoiled new clothes and toys and EXTRA SNUGLY PJ's that I made for them. This was a Christm
as more for mom then the boys! It was Brayden's first Christmas which makes it memorable. It has only been a couple of months since we learned what is wrong with Landen and until that moment it had never occurred to us that we have a limited number of Christmases with our precious child. It is important to us to make the most of our time even if the boys are too young to remember all the activities we want to enjoy EVERYTHING!We spent a weekend up in the mountains fo
r my birthday unfortunately both the boys were sick and puking but we did manage to get out side a little bit. I managed to get the car stuck on a STUPID rock when I slid off the driveway running to Walgreen's to get Tylenol for the boys. The rangers came looked at our 
car and told us they would have to think about how to get us out... they never returned. Took us two trucks and five really nice people to get us out!!! But we did have fun. Landen loved sledding for a little while while he was feeling good. We spent most of the weekend snuggled up with a nice fire and cozy blankets sleeping!Both Little Landen and Baby Brayden got new teeth this month... This is Brayden's first and Landen's 15th!!! Not fun having both babies teeth at the same time! But we made it
through only to have Brayden get his nine month shots and get grumpy all over again! Grumpiness is contagious!! But we have survived sickness were weren't going to give up just because of a couple teeth and a flu shot!! I'm glad to report that although Scott is still sick they babies are back to their happy and destructive selves and Mommy as usual is too busy to be either sick or grumpy!Landen did have some blood work done this month nothing to big just checking some liver functions and other things. Landen's liver is slightly enlarged nothing to be too concerned over in a normal child. But with Landen they just wanted to make sure that it was functioning
properly. Both the boys had checkups with the doctor Brayden is getting so big weighing in 17 lbs 11 oz and measuring 23 inches long... yes he is short and small for his age but when your Mommy hasn't even reached 5 feet you shouldn't expect to be too tall! Little Landen gave me the most surprise after going 18 months THAT'S A YEAR AND A HALF only gaining one pound and 2 inches the little turkey gained almost 1.5 pounds and 2 inches in six months weighing in at 22 lbs and 32 inches... yes he is still very small for a two and a half year old but we work so hard for our pounds and inches with 
Landen that we celebrate every gain (we should start celebrating with cake so that he can gain even more!! Prompting us to celebrate again with another cake... it would be an endless joyful cycle of happiness and
cake!!)Thank goodness after 9 months Landen has decided that Brother is here to stay.... not to say he likes it but he is becoming more tolerant of brother and less likely to hit him for coming to close. The fights are now minimal only when they are tired or Brayden is trying to eat Landen's toes (which he does often). They are even playing together... well near each other... on occasion....
We look forward to February and what it holds... hopefully no more sickness!
Monday, January 3, 2011
End of the Year
So its the first week of January and as promised I find myself sitting at the computer ready to update. It was a slow month for us medically due in part to the fact that I took a two week vacation back to Utah (we just arrived home last night) and Landen is once again with out medical insurance. The good new is that starting tonight Scott is officially a FULL time employee of Western Arizona Regional Medical Center!!! So in 30 days the whole family will be insured! I also arrived home to a letter from the state saying Landen is once again on state insurance which I think may be a mistake so I will start checking into it and if everything seems to be right I will give genetics a call in the morning to start the pre-approval process for the testing. This could take a long time the state has a way of denying things. Brayden's surgery was denied a week before it was scheduled and now I find myself tangled up in an appeals process. Don't worry Brayden is finding that a very minor surgery that most baby BOY'S get in infancy is medically necessary for him.
The Holiday season was fun for
our family Brayden's first and another one with our Little Landen... We are trying to make the most of every event that God gives us with our sweet babies no matter how small. We had Christmas with Grandpa and Grandma Sinex along with Scott's Brother Nathan and his wife Britta. We even made a trip to the Grand Canyon! It was a nice visit from family we don't see often. Then we had a long visit to Grandpa and Grandma Rolfe. The boys and I headed down to Utah on the 19th through the rain and spent a nice week with family and friends. Lots of parting and presents. Most of which was overwhelming for Little Land
en but once he got use to a place he loved exploring and having fun. My sister Eva's new couch was one of his favorites just the right texture for my little Landen to rub his hands all over! A nice visit with Aunties Susie, Ashli and Kat (my college roommates). Brayden and Landen really liked our day with Auntie Heather... not John's new wife... one of my oldest and dearest friends :D her not so little anymore sister was a big hit with Brayden especially! The Rolfe Christmas party was the first time in a long time with all 10 siblings in one place! So much noise and fun! What a week cousins, aunts, uncles, grandma, grandpa! My babies don't know how to entertain themselves anymore! Everyone was such a big help!
I have to admit it was hard running into old friends with children Landen's age. Sometimes in the day to day enjoyment of my boy I forget just how severely this disease has already affe
cted him. They are grown children no longer babies like Landen... walking, talking, running and playing. Some people ask me why I rarely refer to Landen as a "toddler" its because he really isn't. He is still a baby unable to walk or communicate his needs with words or sign... Brayden will surpass him within the next 6 months both in size and development but to me he is Landen. Its not until I see him with others his own age that I realize what he is missing. My baby is stuck at one year old I don't know when or if he will develop or grow. He is a smart and determined little thing though... He will be just the best he can and we love him just as much as our "normal" child. I remember telling someone when we were first starting to be concerned about his growth that Landen just doesn't want to grow up and that he will just be my little baby to hold and cuddle forever... I'm praying that is true!
Scotty joined
us on the 27th the day before my little brother John's wedding. What a nice wedding! Little Landen was ring bearer and in his tired cranky mood dropped the rings :) Heather was beautiful and John was.... well John (lets just say he's a lucky man)! It was fun to see the family all dressed up even though some (IAN) felt very confined in a button up shirt and tie. It was a beautiful ceremony I was crying before I made it to the end of the isle to take my seat. WELCOME TO THE FAMILY HEATHER!!
The rest of the week was fun we payed a visit to Scott's Grandma Danielson a
nd his aunt made a trip down the hill with her kids to see us. We didn't stay more then a few hours because it was the middle of a HUGE snow storm and Grandma was worried that we wouldn't make it back to Garland in safety. But thanks to the great snow driving skills of my husband we made it in safely back. The snow meant we could take Landen sledding like I wanted too... unfortunately I have a little brother named Tim! Landen was too grumpy so we took him home to lay down thinking we would go pick him up after his nap and take him back to the hill. But by the time we got back Tim had broken BOTH our sleds! Plus it was FREAKING COLD!!! We spent New Years wit
h some of the family seeing Tron and hanging out at Eva's house... It was a (as Eva puts it) blasty blast! The 11 hours of traveling yesterday were defantly the low point of the trip but we made it home and we still have one more Holiday celebration... Scott and I left the boy's presents in Arizona so that he would be with them when they opened them so Scott works the next 4 nights and this weekend is our 4th and final Christmas celebration (at least until next winter).
Thank you to all the family who blessed us with gifts everyone was so thoughtful when it came to Landen especially taking into account his likes and needs! My little boys are sufficiently spoiled! This Holiday season has been a family filled one for which we are grateful. Our families are a great support to us we only wish we could be with you more. Every day with our boys is a gift the best gift we have been given!
The Holiday season was fun for
our family Brayden's first and another one with our Little Landen... We are trying to make the most of every event that God gives us with our sweet babies no matter how small. We had Christmas with Grandpa and Grandma Sinex along with Scott's Brother Nathan and his wife Britta. We even made a trip to the Grand Canyon! It was a nice visit from family we don't see often. Then we had a long visit to Grandpa and Grandma Rolfe. The boys and I headed down to Utah on the 19th through the rain and spent a nice week with family and friends. Lots of parting and presents. Most of which was overwhelming for Little Land
en but once he got use to a place he loved exploring and having fun. My sister Eva's new couch was one of his favorites just the right texture for my little Landen to rub his hands all over! A nice visit with Aunties Susie, Ashli and Kat (my college roommates). Brayden and Landen really liked our day with Auntie Heather... not John's new wife... one of my oldest and dearest friends :D her not so little anymore sister was a big hit with Brayden especially! The Rolfe Christmas party was the first time in a long time with all 10 siblings in one place! So much noise and fun! What a week cousins, aunts, uncles, grandma, grandpa! My babies don't know how to entertain themselves anymore! Everyone was such a big help! I have to admit it was hard running into old friends with children Landen's age. Sometimes in the day to day enjoyment of my boy I forget just how severely this disease has already affe
cted him. They are grown children no longer babies like Landen... walking, talking, running and playing. Some people ask me why I rarely refer to Landen as a "toddler" its because he really isn't. He is still a baby unable to walk or communicate his needs with words or sign... Brayden will surpass him within the next 6 months both in size and development but to me he is Landen. Its not until I see him with others his own age that I realize what he is missing. My baby is stuck at one year old I don't know when or if he will develop or grow. He is a smart and determined little thing though... He will be just the best he can and we love him just as much as our "normal" child. I remember telling someone when we were first starting to be concerned about his growth that Landen just doesn't want to grow up and that he will just be my little baby to hold and cuddle forever... I'm praying that is true! Scotty joined
us on the 27th the day before my little brother John's wedding. What a nice wedding! Little Landen was ring bearer and in his tired cranky mood dropped the rings :) Heather was beautiful and John was.... well John (lets just say he's a lucky man)! It was fun to see the family all dressed up even though some (IAN) felt very confined in a button up shirt and tie. It was a beautiful ceremony I was crying before I made it to the end of the isle to take my seat. WELCOME TO THE FAMILY HEATHER!!The rest of the week was fun we payed a visit to Scott's Grandma Danielson a
nd his aunt made a trip down the hill with her kids to see us. We didn't stay more then a few hours because it was the middle of a HUGE snow storm and Grandma was worried that we wouldn't make it back to Garland in safety. But thanks to the great snow driving skills of my husband we made it in safely back. The snow meant we could take Landen sledding like I wanted too... unfortunately I have a little brother named Tim! Landen was too grumpy so we took him home to lay down thinking we would go pick him up after his nap and take him back to the hill. But by the time we got back Tim had broken BOTH our sleds! Plus it was FREAKING COLD!!! We spent New Years wit
h some of the family seeing Tron and hanging out at Eva's house... It was a (as Eva puts it) blasty blast! The 11 hours of traveling yesterday were defantly the low point of the trip but we made it home and we still have one more Holiday celebration... Scott and I left the boy's presents in Arizona so that he would be with them when they opened them so Scott works the next 4 nights and this weekend is our 4th and final Christmas celebration (at least until next winter).Thank you to all the family who blessed us with gifts everyone was so thoughtful when it came to Landen especially taking into account his likes and needs! My little boys are sufficiently spoiled! This Holiday season has been a family filled one for which we are grateful. Our families are a great support to us we only wish we could be with you more. Every day with our boys is a gift the best gift we have been given!
Wednesday, December 1, 2010
Test Results Came Today & Green Veggies are Back on the Menu!!!
So after all our waiting the test results are finally back! Three weeks of waiting! I think it had to do with Thanksgiving because it took a week longer this time. Let me clarify since there seems to be a little confusion when I said he was being tested for IRD since I have already said he was diagnosed in my first post... Well he was unofficially diagnosed with it by two other doctors who felt like they didn't want to make it "official" until we saw this geneticist in Phoenix and the testing that we had done were the same blood tests plus one that we had done in September. The geneticist knew he had a PBD but didn't want to commit to IRD until he had a confirmation test. Anyway the geneticist office called today saying they wanted me and my husband to come in together to see him. Well as of 12:01 this morning Landen is no longer insured so I told the secretary that we have already had the "bad news" its just a confirmation test so please see if he would make a phone call instead. So less then 20 minutes later there was the call... and although we already knew its still hard to hear the confirmation test confirmed that he had a PBD on the mild/moderate end. (there is a picture
of the zellweger spectrum of diseases) In other words he has IRD but not the mildest form... there is still the chance that it could be NALD because it is more moderate but he thinks it fits closest to IRD so that is what we will stick with. Our next step once we get Landen insured again is to do DNA testing to find out just which genes have the mutation that will give us even more information. Don't let the terms mild or moderate fool you it doesn't matter which one it is the prognosis is fatal... we are just talking about how long it will take the disease to progress to that point.The good news! Our pediatrician told us to avoid red meat, fish, dairy and green veggies but he wasn't sure about the green veggies just avoid them to be careful. Well geneticist and nutritionist agree that green veggies are safe because the substance we are trying to avoid are bound in a way that humans can process them straight from plants. Some animals can such as cows for example eat plants and break them down and the VLCFA (very long chain fatty acids) move into their fat so their meat and products give them to us. You and I processes them in our cells but Landen's cell are "broken" and he can't. So tomorrow we can feast on broccoli, green beans and spinach if we want!! Good news cuz if you haven't notice most veggies are in fact GREEN!
The last few weeks have been pretty calm for us not long trips mostly just waiting around for results at home. It was a little rougher for me having all this time to sit and catch up with everything. I had my low moments but I always know who I can call to make me feel better. It seems like I was too busy to think about it much. We had a nice Thanksgiving made Landen his own special pumpkin pie with almond milk instead of canned milk... he didn't ea
t it... He went through a week long period where it was a fight to get him to eat anything. We decorated our tree and are looking forward to our visit to Utah for Christmas and Johns wedding. Landen is working on walking trying really hard and landing on his diaper a lot. Brayden is almost crawling he rolls and army crawls now and has also started self feeding. I wasn't expecting it at 6 months since Landen just picked up that skill last month. Its strange having Brayden after Landen I'm constantly surprised at how fast he is growing and developing compared to Landen. I can't believe his development catches me by surprise heaven knows I've had plenty of baby experience but I always compare him to Landen first. Although this doesn't seem fare to Landen... Landen should only be compared to Landen he can't even be compared to others with this disease since it is so different with everyone. I'm a proud Momma to see Brayden grow and develop so well... and I'm a proud Momma when Landen learns a new skill no matter how small!
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