Shortly after his second birthday our Little Landen was diagnosed with a Proxisomal Biogenesis Disorder (or PBD) a rare yet fatal genetic disorder. It hasn't been easy for us to share and this site has been created to help us keep everyone updated with doctors news, information and what is going on in our journey. We know we have tons of family and friends support and love. We hope and pray that we are blessed with many more years to watch our sweet baby grow!
My Little Landen
![My Little Landen](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjK32IjCrctpUWsmr8ppxcB2vfC6ELmSolpZXnOGBLsY1fyaRf0Jz9LkXiZo0a5Bq2dYMQ0FDKkC_Q68HKPKA6jNLktZNNbaoHk0TMoRkFpLITC5Yswsq-Ru_USnqIb4jRnaUzcD8A8_c1L/s1600/17.jpg)
This blog has been created to help others keep up to date and follow our journey. I will post as often as I feel there is new news in his condition or our family be it good or bad.
Thursday, October 27, 2011
Tuesday, October 25, 2011
Long overdue update...
Since our last update Landen has started with his new therapists. Being three now he is receiving preschool services in home. Its been fun getting to know that new people who will be helping with Landen. Its been several weeks and they are getting to know Landen (and Brayden who gets involved in everything).
Brayden has gotten really good at hiding things and weeks ago took off with Landen's hearing aids. After four weeks of searching and finding nothing I called the audiologist and found out that he had replacement warranty on them until the first
Both the boys are growing good! Landen has gained his two pounds back that he lost while sick keeping him just ahead of his brother in weight. But of course Brayden takes
Scott is working hard as usual poor guy he never seems to get a break... and I'm... tired as always. I've been working extra hard the last two weeks trying to complete Halloween costumes for the boys and I am so close to being done. I should be able to finish in the morning. We will be trunk-or-treating Friday with Scotty and then me and the kids will be leaving for a long trip to Utah. We will celebrate Halloween with my family and then enjoy the time that my brother John will be home before leaving for Germany. Scott will fly in one weekend and we will all celebrate Thanksgiving together it will be early but our family will be together and that is what counts. I will try and update while I'm gone.
Its been a hard month for our PBD family. Many of our kids are not doing well and just this last weekend we lost two precious babies Angel Chase and Angel Ilan. It hits me hard not just every time one of our children leaves us but even when they are not doing well. I have grown to love the PBD family they are a great blessing in our lives. I feel pride when I hear of their achievements and progress and I cry for them when they are doing poorly. Its a bond hard to explain... we are a group of people who if it were not for this terrible disease that our children have in common we would have no connection. But because of our children we are very much connected to each other like one close family. To all my PBD family I love you and am always thinking of you!
Tuesday, August 30, 2011
So here is what's going on...
So Landen started feeling a little low while we were winding up our trip to Utah. I noticed that he was acting uncomfortable and didn't want to move much but I was hoping that he was just worn out after being away from home for two and a half weeks. We flew home on Friday by then I was noticing he was going through fits of pain. It would come and go and he was very lethargic in between. I have been stressed out and worried for him all weekend but I knew he already had his three year wellcheck scheduled for Tuesday (yesterday) so I was holding out. Monday night he seemed to be okay and Tuesday morning he was just fine so I just left for the doctor prepared to discuss it but was no longer really concerned. Due to the alinement of the planets or something everything went wrong at the doctors office. The other doctor who see patients at his office was out leaving our doctor already backed up when as soon as I got into a room (and hour and fifteen minutes after my appointment) the computers went down! We always wait to see Doctor Barton he spends so much time with each patient that we always end up waiting but this was a record. We feel like this doctor is worth the wait because he does such a good job helping coordinate everything for Landen. Anyway back to the waiting room... Landen had one of his pain episodes in the waiting room and he didn't let up. By the time we got him back the whole staff knew that there was obviously something wrong. We had everyone in from nurses to receptionist trying to comfort him. The nurse gave him some Motrin and he was finally able to fall asleep for a few minutes but woke up screaming again. He was curled up in a little ball looking so sad... We hardly got to discuss anything else cuz it was obvious that Landen was in pain. So the doctor ordered some xrays and blood work to see if there was something obvious we could see causing it. We did that yesterday but I just got to talk to the doctor about an hour ago. There is a stomach virus going around that has landed some kids in the hospital already. It causes sever stomach cramps and gas. Landen's xrays are full of gas so he is pretty sure Landen has it. That plus the fact that my family was all sick when we were in Utah makes me believe he is right. He says as long as he doesn't get any worse and he is drinking lots of fluid we can just keep him home and try to make him feel comfortable while his body fights it off. This is a relief in a way a stomach virus is something I can deal with and take care of. So as of this moment though there is still much to do I feel my stress levels slowly descending... not back to normal but not nearly as high. As for the rest of the well check it mostly happened over the phone tonight. Except the height and weight. Landen is still 33inches like he was in January so he hasn't gotten much taller but he has lost weight. When he was seen at the CRS clinic a few months ago he was almost 24lbs but he is now only 22lbs 13oz which doesn't seem like a huge weight loss until you look at it in ratio to his weight. A little worrisome but he has been sick after all. So now its just waiting and caring for Landen till he gets better. Its hard as a mommy to watch him go through it and not be able to do anything about it. So for the next little while if I'm tired, stinky, irritable or just plain grouchy please forgive me I'm a busy mom!
Our Long Trip
We left after our week for the trip home it was a fun adventure we stopped at the four corners
One of my favorite experiences was being able to attend the Logan Temple with my roommates. Its been so long since I have been able to go. I went once right after Landen was born but haven't really been back since. Its been hard for me with everything that is going on in my life to not only find time but to find motivation to go. Its no secret that the last year of my life has been a struggle and this last month has been extra hard. (the 20th of August is the year mark for Landen's diagnosis) But I have also been so blessed with new family and friends through the GFPD. I have needed to go to the temple for some time now but
Landen started to feel a little low towards the end of the trip. I don't know if it is due to some bug or exhaustion. I came home last Saturday on a way too early plane and was so wiped out from the trip that I slept all day. Now that we are home Landen has not gotten much better and in fact has grown a little worse. I do not want to get into the whole story right at this moment there is still too much going on but I will blog tomorrow. Just remember Landen in your thoughts and prayers and I will keep you all posted.
Wednesday, August 10, 2011
Landen's Birthday Present
I couldn't help but post a few pictures of Landen's birthday present. We wanted to get him a ball pit of his very own since he never seems to want to leave the one at therapy but we couldn't find one in town. This was originally my idea for Brayden's birthday but Scott thought it sounded too messy and too big for our house. It wasn't until Scott saw how much Landen loved the little one that they had in the play room in Omaha that he agreed to let me get Landen on for his birthday. Unfortunately even though they had them in almost every store in April for some reason no one has them now so we had to order the balls online. They just came in the mail today. I just got a little swimming pool at the Kmart summer clearance sale to put them it. Its just perfect for Landen and maybe a little cozy when Brayden gets in too but they need to learn to get along eventually anyway.
Monday, August 8, 2011
Happy Birthday to My Sweet Little Landen
My sweet little boy is three! And that is what is important today! I woke up and started singing to him. Made him his favorite food PANCAKES for breakfast. Snuggled him close and sang happy birthday songs to him till he fell asleep at nap time. Played and snuggled some more.. just tried to be close to
This last year has been a roller coaster but I have seen so much growth in him. Although the numbers would say that he has only gained 2.5lbs and a couple of inches and he wore the same birthday boy shirt I made for his first birthday. But I see growth... you can see it in his face and features he doesn't look as "baby" as he did before. He is starting to communicate more not with words or sign but in other ways. He is playing more and learning to do new things getting so much personality. My little boy gives me so much to be proud of!! He is so friendly he loves to laugh and is learning to express feelings. He has picked up several ways to say "I love you" or "I'm happy" just recently he has started giving the biggest hugs and licks! I love it when he grabs my face and puts our foreheads together and laughs that means just as much as if he were to say "mommy I love you". Still a snuggle bug. Fr
Thursday, August 4, 2011
2011 GFPD Family & Scientific Conference
I'm sorry this has
taken me so long to post about the conference its been almost a week since the conference... I've sat down at this computer several times in the last week to write and found that words didn't come. There are so many thoughts and feelings that I just cannot seem to put into words. It was such a wonderful experience. Maybe this will help this is the opening video from the conference. These are face of the amazing children who like my Little Landen suffer from this disorder.
What an amazing opportunity this was for us! Look at those beautiful faces! They are the reason for this whole experience. I'm having a hard time putting into words what this experience was for us. It was more then just fun, it was more then just informative, it was so much more...
Sometimes its hard not to feel alone in this struggle... I have my husband, family and friends who support and love me but still its me here every day dealing with this awful disease. But to share a few days with others who like me have amazing children with this awful disease it was very special. The GFPD is a wonderful organization (please visit http://www.thegfpd.org/). Less then a year old they were able to put this event together with the help of some wonderful people.
We left Arizona at 6:30 Saturday morning to head to the Las Vegas airport. Literally from the moment we walked into the hotel we were surrounded by family... Our PBD family. The Burdick's who we already know from Flagstaff were there as well it was so nice to see them and share this experience with them too. We meet up with many family's that night at dinner it was hugs and joy right from the beginning. I
have to admit that I felt lost for a moment to finally see these people whom I've been talking to online for so long. Most of the time I recognized their children's faces but not theirs. I felt like we should all be wearing our profile pictures so that we would be able to identity one another. It was a shared experience for all of us there was no uneasiness that usually accompanies when a large group of unknowns get together for the first time. We were already family brought together by our shared experience and our children.
Sunday morning Scott and I took the kids to the Omaha Zoo it was fun it was a big zoo with lots of animals. We spent the time looking at animals and riding some rides. We let Brayden get out of the stroller and just run! That boy has so much energy!! He was so cute running all over only pausing to watch and laugh when he saw movement in a cadge. He was so funny so interested in everything. We meet
up with our friends and saw some more of the zoo. The conference started that afternoon so we headed back to the hotel.
We learned so much at the conference tons of useful information. We were able to ask questions and get answers from people who actually know what they are dealing with. We learned more about this disease, what should be doing and looking for, nutrition, working with hearing and vision loss, research going on and the science behind everything (most of which was WAY over my head). But I have to say my favorite part was watching Little Landen interacting with every one. Both Brayden and Landen made so many friends! They are both so friendly and everyone was so excited to spend time with them. I think that the boys made more friends then we did.
One of the most touching part of the conference was the tribute they did for all the children who have passed on. There were tributes shared candles lit in memory and this beautiful tribute video.
We left Arizona at 6:30 Saturday morning to head to the Las Vegas airport. Literally from the moment we walked into the hotel we were surrounded by family... Our PBD family. The Burdick's who we already know from Flagstaff were there as well it was so nice to see them and share this experience with them too. We meet up with many family's that night at dinner it was hugs and joy right from the beginning. I
Sunday morning Scott and I took the kids to the Omaha Zoo it was fun it was a big zoo with lots of animals. We spent the time looking at animals and riding some rides. We let Brayden get out of the stroller and just run! That boy has so much energy!! He was so cute running all over only pausing to watch and laugh when he saw movement in a cadge. He was so funny so interested in everything. We meet
We learned so much at the conference tons of useful information. We were able to ask questions and get answers from people who actually know what they are dealing with. We learned more about this disease, what should be doing and looking for, nutrition, working with hearing and vision loss, research going on and the science behind everything (most of which was WAY over my head). But I have to say my favorite part was watching Little Landen interacting with every one. Both Brayden and Landen made so many friends! They are both so friendly and everyone was so excited to spend time with them. I think that the boys made more friends then we did.
One of the most touching part of the conference was the tribute they did for all the children who have passed on. There were tributes shared candles lit in memory and this beautiful tribute video.
Tears freely flow every time I watch ether of these videos these children are so beautiful and their families are so amazing. My heart is so full of the people we met there and of course the story that we all share. These children are so amazing so similar in so many ways yet so very unique. To all my PBD family... You are so amazing! I love you and wish that we could all be together more often. Thank you for the experience we look forward to next year. There is so many of you that I wish I had spent time with talking, sharing and getting to know you all much better. I feel like there just wasn't enough time. There are so many of you that I didn't get to say more then a few words to but you still mean so much to me. I follow what I can online and love talking and sharing. You inspire me and bless my life. Thank you for showing so much love to my boys and my family! Next year seems so far away for me.
Monday, July 25, 2011
Another Loss in Our PBD Family
So sorry to hear of another loss last night. A family who I have not even had time to get to know lost their little Lily Grace. She now rests in heaven with Heavenly Father and all our other PBD angles. They have only been a part of our PBD family for a short time. Miss Lily was less then 3 months old. It breaks my heart to know of another family who are left behind as their little angle is gone on ahead without them. I would like to take this moment to send love and prayers to her family and to all the other mothers who are left behind to miss their children.
Wednesday, July 6, 2011
Landen's Ears, Therapy and Doctors
Tuesday we went to Flagstaff to see if there was any improvement in Landen's ears. The mineral oil treatments did the job in the left ear but not the right. The audiologist tried again to get the wax out herself but his ear canals are just too small for her instruments.
The PT was a wonderful guy as well he is one I haven't seen there before but he agreed that Landen would do well with a walker and was even able to make some heel inserts that keep Landen from leaning too far back when he tries to walk. Its going to take some time to get the walker because in the state of Arizona a child like Landen
The best news of all Landen has gained weight! He is now 24lbs 9oz meaning he has gained almost 2lbs in the last 6 months considering he has only gained 4lbs 10oz since his first birthday the last two so quickly is so amazing! Its no wonder with the way he has been eating lately. Landen for the first time is out eating Brayden! I forgot to write down his height so I can't tell you exactly how many inches he has gained but I know he has gotten a little taller.
Now we are looking forward to our Omaha trip at the end of the month and August 8th will be Landen's birthday!!! Which also happens to be the first day of school here meaning the day Landen turns three he will start receiving in home services as well as out patient in Kingman!
Wednesday, June 29, 2011
Grand Canyon
Its been a few days since our trip to the Grand Canyon to see
my sisters family but I have been so busy getting back to real life that I haven't really had the time. Its been two weeks since I've had to deal with silly things like grocery shopping, bill, therapies, cleaning the house that sort of stuff and it all got backed up.
It was a fun trip! Eva didn't tell the kids we were coming she convinced them I was too busy to make the drive up so it was a surprise. I also made Victoria a cake since she celebrated her birthday the day before it was a surprise
as well. So we left our house as soon as Scott got off work Friday morning and drove the 3 hours to the canyon. The kids were out walking down the sidewalk and were very surprised when they bumped into us who just happened to be there (wink wink). It was so nice to see them! We enjoyed walking the rim with the kids. My little boys got so much attention from all of their cousins. Maybe a little too much since
Baby Brayden still thinks that someone should be holding him and playing with him at all times. Brayden is so cute and smart he knew just who to smile at to get taken out of the stroller... Eva or was it Tory? I think they are both guilty! I think Jacob spent more time in the stroller then he did. But it was good he doesn't get to see his cousins very often.
It seems like forever since I've spent time with Eva's family and I miss them already. One of the highlights of my trip was when me and Ethan were walking together and he grabbed my hand and said "I love you Aunt M,
I miss you a lot" What a sweet kid. I loved watching my sisters girls take care of my kids and mother them. I use to babysit them when they were just babies themselves. Its hard to believe that if I lived closer I could have Tory babysit for me all the time. She use to tell me that if I did it for her then by the time I had kids Tory would be old enough to watch my kids. Now I live too far away to collect on that offer. My sister has five for those of you who don't know and she has done and amazing job with all of them. They have their moments like any kid would but over all they are very very good kids.
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We spent the day walking and checking out the rim. Even Jacob seemed to handle everything very well and walked most of the day with us. We had dinner at the canyon and then Scott and I took the boys to Eva's hotel room to rest while they went to do some star gazing. That's when I was able to get Tory's cake out. I just set it on the table for her to find when they got back. Rebecca spotted it first but Tory's reaction was the best!
She was so excited and was giving her mom hugs saying thank you over and over again. Then when she found out I made it she was so happy. It was a fun surprise!
Saturday was a long day we didn't get much sleep cuz the only hotel room we could get was in Williams so we had to drive the 50 miles there after the cake before we could fall asleep ourselves. Then it was up early the next morning with the kids. Scott really wanted to go to see the IMAX so we left Brayden with Eva thinking we would be able to catch up with them but because it was so crowded in the park and we had bad cell reception we really didn't meet up till late. Then we had lunch and
headed home. Eva and Carl had an even longer day having to go back in the park one more time to try and find her missing camera bag and then had car troubles and so by the time they were leaving the park we were already home. They didn't arrive at our house till 10:30 and had to get going early. Its always hard to say goodbye but hopefully we will be able to go to Utah. I want to make a trip up to see my brothers baby who is going to be here very very soon but we still have so much going on.
It was a fun trip! Eva didn't tell the kids we were coming she convinced them I was too busy to make the drive up so it was a surprise. I also made Victoria a cake since she celebrated her birthday the day before it was a surprise
It seems like forever since I've spent time with Eva's family and I miss them already. One of the highlights of my trip was when me and Ethan were walking together and he grabbed my hand and said "I love you Aunt M,
We spent the day walking and checking out the rim. Even Jacob seemed to handle everything very well and walked most of the day with us. We had dinner at the canyon and then Scott and I took the boys to Eva's hotel room to rest while they went to do some star gazing. That's when I was able to get Tory's cake out. I just set it on the table for her to find when they got back. Rebecca spotted it first but Tory's reaction was the best!
Saturday was a long day we didn't get much sleep cuz the only hotel room we could get was in Williams so we had to drive the 50 miles there after the cake before we could fall asleep ourselves. Then it was up early the next morning with the kids. Scott really wanted to go to see the IMAX so we left Brayden with Eva thinking we would be able to catch up with them but because it was so crowded in the park and we had bad cell reception we really didn't meet up till late. Then we had lunch and
Tuesday, June 21, 2011
California
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John Graduated Thursday morning. I can't believe how grown up little scrawny Johny looks in his uniform! It was exciting I was so proud of him. Even if I could barely hear anything above the screaming of my tired kids. Unfortunately the Army didn't ask me when my kids nap time was so they could take that into account when planning this event! We all walked down John's class room where the students and teachers we all gathered for a little celebration. Its amazing how well they speak french. I took several years of french in High School and in College and can barely remember enough to introduce my self and ask what time is it! That is when my camera broke... don't know what happened to it? It was working just fine and I set it in the stroller and picked it up again and it just wouldn't work so we had to head out and get a new camera (no I cannot live one day without mine). John and Heather too
Being with family is so fun the kids were all giggles and smiles with all the attention they got from their aunt and uncle. Friday they took us to the Santa Cruz Boardwalk. We had so much fun playing on the beach, (it was too cold to get in the water) riding park rides and eating
Saturday and Sunday we went to the beach and played some more. It was grey and cloudy the whole week we were there but even with the gray clouds the ocean is still beautiful! Saturday was Seventeen mile drive and Pebble beach which was beautiful. Brayden loved the wet sand he would hold onto my hands and run town the beach toward the water. He would smile and laugh as long as the water only got his toes if it touched his diaper he would cry. It was really cute. Landen was having a bad
Sunday was Carmel beach which was beautiful! The houses around are so cute I want to live there! We actually weren't their very long although we did manage to wear ourselves out. Landen was in a much better mood and enjoyed the texture of the sand. He would pat it and pick up handfuls. We had to keep stopping him from wanting to rub his face in it. Brayden was a silly boy he loved getting his legs covered and stealing everyone's attention. J
Just hanging out at the house with John and Heater was so much
Now we are planing on going to the Grand Canyon on Friday to meet up with my sister who gets there with her 5 kids tomorrow and then having them spend a day here. I'm so excited!
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