Mothers Day in The Hospital

Yep that right I spent mothers day in the hospital. Most everyone knows Landen was sick and had to spend time in the hospital last weekend but in case you were wondering here is what happened. Sunday (May 5th) Landen started getting sick. Monday he was upset and had a fever... fever continued Tuesday through Thursday up and down often around 103. Took him to the doctor on Tuesday and they started antibiotics. By Thursday his fever was more up then down and he stopped eating and drinking. I was gone with Brayden and my parents in Logan and by the time I got back he was so sick. I couldn't even give him much of a cool bath because he was so week and shaky. I rushed him to the ER in Tremonton and we spent most of the night there receiving fluids for his dehydration.

Friday I took him in as soon as I could to see his Pediatrician in Logan. He made the decision to admit Landen due to his high fever and dehydration. We spent all weekend there getting IV fluids and Meds. They were able to keep his fever under control and help him with the pain he was experencing in his tummy till he was well enough to keep eat and drink again. It wasn't until Sunday morning that his fever finally broke. We spent the rest of Sunday resting and eating as much oatmeal and yogurt that I could get him to eat. Even now that he is feeling much better he only wants yogurt and oatmeal. Monday the last of the many test results came back telling us that he had adenovirus.

Monday we went home but he was already starting to feel better. By Wednesday he was almost better. Now he is feeling great but still week. I expect it will take him another two weeks or so to regain the strength he lost... and hopefully the weight he lost as well.

I can't say it was the best mothers day that I ever had in fact it sucked being in the hospital and away from Brayden. But I'm very grateful for the way it all turned out it could have been a lot worse. I have to say that the nursing staff and our doctors did a wonderful job. Landen was sure loved by everyone there. Most of them remembered him from his stay after his CI surgery. I hope we don't have to meet again but chances are we will so I'm very glad that they are there for him.

Brayden is Three!

I can't believe it my little Brayden is three! Where has the time gone? Brayden is such an amazing little guy. So much energy and fun mixed with sweetness and caring. He is doing so much now a typical three year old boy. He loves his TV shows almost as much as he loves being outside. I think his favorite activity is jumping on the trampoline. Trains, cars and dinosaurs that is what my little guy likes.

Questions questions questions.... The little boy is so full of questions. Whats that? What color? Where's Landen? I've even caught him asking and answering himself questions when no one is around. In the bath tub the other day he was saying "what color is that duck" and answering "blue" "green" "YELLOW" (he loves to say the word yellow). He is so stinking smart there is not a child safety lock or gate that he hasn't figured out yet. He loves to talk and read books. He can't even watch a show without running into the other room to tell me exactly what Curious George is doing at that moment.

He is a caring and loving brother. He is always concerned with where Landen is and what he is doing. He loves to help out with Landen bringing him food and toys and letting us know when Landen's ear (his Cochlear Implant) is not on. He also loves to take care of Mr Monkeyface sometimes he dresses him and diapers him. He is always setting him up in his high chair with some food.

Yes Brayden and Mr Monkeyface are still fast friends they can't be separated with a crowbar. He goes everywhere with Brayden. Monkeyface is getting very worn out and almost ready for another stuffing.

I love my Brayden boy so much and am so proud of him and everything he does. What and amazing child I have been blessed with! Happy Birthday Brayden!

Hearing and loving it!

Landen has been hearing for a month now and its been great! We have been enjoying every minute of it. We also hear such positive responses from Landen's school. They have really noticed a change in him. He is much more energetic and attentive to activities. The changes are not extreme mostly subtle but very amazing non the less. I notice the most amazing little things. Feeding him is no longer a struggle he is more attentive and willing to let me help him. He lights up in the bath tub. We noticed that he has a fondness for soft music and wind chimes. Best of all he loves to hear mommies voice. There are so many little things that just make him light up. He loves the sound of his own laugh. Its the funniest thing to see him when he starts to giggle witch makes him laugh, which gets so out of control he gets the hiccups. Which of course makes him start to laugh even harder.

Cochlear Implant Surgery

So its been almost a week now since the surgery and the swelling is going down and it is healing nicely. Thought I would finally post about the surgery since some of my family isn't on facebook.

We went to the hospital last Wednesday morning we were scheduled to start at 9:00am. They put us all alone in the big pediatric post op which we got all to ourselves since he was the only pediatric surgery that day. Landen was such a happy go lucky boy having so much fun even though he hadn't had anything to eat all morning. Somewhere around 9:15 they came and told us that the surgery before us was running over. The wait just kept getting longer and longer. Landen held it together pretty good until the last 15 minutes before he went back. It wasn't until 10:00 that they finally got him into the OR.

We were expecting a three hour surgery maybe three and a half that is what the surgeon scheduled out. My brother John and his wife came to sit at the hospital with us since they are visiting from Germany. It was nice not to have to sit alone and wait while we watch silly TV shows and try not to think about our baby boy.  My brother Isaac showed up not to much later with his family. Then my sister and my parents. Thank goodness they gave us the big room cuz we kept growing. Time for me just dragged and half way through they let us know that the surgery was going well but longer then expected. So it was more and more waiting.

The surgery ended up going almost five hours. I was so nervous I wanted to see him so bad. It seemed like forever before the doctor came to see us. He explained that it was the toughest cochlear implant surgery that he ever did. Landen's cochlea was turned in an usual way making it harder to get to. Plus his facial nerves were not in the usual place so he had to drill closer to them then he expected so he had to go slow so he wouldn't damage the nerve leaving his face paralyzed or partially paralyzed. But in the end it was a very successful surgery. They got it all in place and had 100% insertion into the cochlea.

We went back to our waiting for Landen and it seemed like they would never bring him back to us. The doctor came to talk to us again and said that Landen they wanted to admit Landen into the hospital possible over night just to watch him. Although most kids go home after a few hours they didn't want to risk it by treating him like any normal child they were going to keep him. They wanted him to stay till six and then make a decision on if he should stay overnight. So we didn't get to see Landen right away.

We moved up to pediatrics to wait again... eventually the rolled him in an hour and half after his surgery had ended. We found out that he had throwing up in recovery. Poor guy looked so miserable. All my family got to see him and we settled in. At six we made the choice to keep him there overnight. I stayed with him all night it was a long night and he was in a little of pain but by morning he was looking better just not eating. We waited until noon and went home.

Since then he had done great it wasn't until Friday afternoon that Landen finally got out of bed and ate some food. By that night he was up and back to his normal crawling and playing. The stitches come out on Friday and we activate his equipment on the 27th. That is when he will finally be hearing us all again!

Ready for Surgery

Here I am the morning before surgery finding it hard to sleep I decided to blog... I still have a few more hours until I have to wake Scott and the boys up but I'm getting my pre-surgery jitters out. I have been through a ton of testing and imaging with Landen all needing various sedation or anesthesia so I know he does well. But you can't help as a mother to still get a little nervous every time they take your little one back into the OR without you. I'm really excited for this I have worked endlessly for Landen to receive his cochlear implant and its finally time!

We have been so busy lately between CI stuff and getting him re-established with many of the doctors down here. Last week we meet with a new geneticist at Primary Children's who was so nice and seemed to know everyone. Including our geneticist in Arizona, Dr Zellweger whom the PBD spectrum is named after, and Dr Braverman who we see with the GFPD he knew when she was just training in genetics. We really enjoyed meeting him and he has already gone above and beyond in helping find resources answers to some of our questions.

Yesterday Landen got a new set of braces his old AFOs still fit but we were not getting the results we wanted with them. I had previously discussed with the OT in Flagstaff that there might be a need to put him in a taller brace since he was hyper extending his knees, walking on his toes and leaning back too far when he tried to walk. The OT we see now in Logan suggested the same thing. He is really good at explaining why Landen's needs things and exactly how it will help him. We agreed and fitted him for a new braces and we picked them up yesterday. The manufacture didn't quite fit them right and they are too tight and already are causing some red spots and irritation on his feet. So we are actually getting new ones made and only using these ones to get him use to the idea of the taller brace. I love how as soon as we put them on we could tell a difference. He stands straighter and the few timid steps he took were heal to toe instead of toe to hill which is what we were going for. They are also at a different angle because he spends so much time with his toes pointed he was loosing some of the range of motion in his ankles and this will force his feet into a position that will stretch the muscles and prevent the tightening we already see a little of.

Also yesterday he was fitted for his first adaptive stroller. This is a stroller we are getting through our insurance company that will be able to fit him and his needs for many years to come. We no longer need the double stroller and his poor little feet practically drag on the ground in the single stroller we have. Plus his school has requested it since they have to carry him from place to place if he refuses to use his walker. Its tiring I know cuz I do it! He is so small yet he isn't small anymore... if that makes sense.

I look at Landen two different ways sometimes I guess depending on my mood. Sometimes I look at him and see how big he is and how much he has grown. Looking back at pictures a year or more ago and compare him to himself. This is when my heart swells and I'm so proud of him! What accomplishments he has made and how wonderful it is to see him grow! Then there are the times I can't help but compare him to others. Mostly Brayden who has now slightly outgrown him and other four year olds. The he is so small... I really try to avoid this but sometimes its hard. Especially being around friends who have four year olds. People I was pregnant with and I was so excited to see our kids grow up together. I see them running and dancing and playing and going off to school. I see them interacting with their family and making friends knowing I will never have that kind of interaction with Landen. Usually it doesn't really bother me Landen is Landen and I love him. But every once and a while I can't help but feel a little jealous or heartbroken over missing out. Today is not a sad day though today is a happy day. Today is a day where I'm so proud of my little Landen! I'm proud of my family and my husband. It has been so much work getting here. I have worked through frustration and stupidity and my own tears to get to this point. My little Landen is getting his cochlear implant and in a few weeks (the 27th and 28th) they will be activated and he will be able to hear! Can you believe it! What a miracle this is for our Landen. I know it sounds dramatic but this will change everything! It gives him one more way to experience his world and he has so few ways now.  I love my Landen! I will post as soon as I can about the surgery but now I think I will try and grab one more hour of sleep or maybe a relaxing bath.

Settling In...

So yes I'm not the best blogger but in my defense moving to another state in a moments notice leaves you really busy trying to get the entire family caught up with the change. Not to mention the change in doctors and insurances and treatments ect. Finally starting to feel settled into our new life. No Scott hasn't found work yet but he is going out for interviews and working everyday to find something. We have also applied for him to go back to School next fall. But even though the work hasn't come to us yet we have found things better in every way for our Landen...

Most of you know but Landen started School January 4th. He attends the Early Learning Center in Corrine. This is a developmental pre-school where most of the children have developmental or medical needs. He attends only two days a week for now he goes Mondays and Fridays. Their days are only three hours long but they pack a lot in and it means Landen is home before nap time. We love it there Landen is getting to know and love his teachers. He recognizes them outside of the classroom and gets excited to see them. He receives all his therapies and services at the school. We get lots of positive feedback from his teachers and therapists. We have meet in a group with the teachers and therapist and developed a new IEP for him that I'm really excited about!

We have set him up with some new doctors who we really like (and when I say we I include Scott who is able to attend doctors appointments for the first time since he doesn't have to be at work) I'm loving the fact that they are so much closer!! We also have set up extra out patient therapy in Logan which we go once or twice a month. This physical therapist helps us with Landen's medical equipment. He is helping us get Landen an adaptive stroller because he is getting to heavy to carry all the time. Landen is getting new AFOs and some therapy equipment for the home. The PT also gives us instruction and ideas on how to help him in our home.

The most exciting news is that Landen is getting his CI (Cochlear Implant)! It was such an amazing thing my head is still spinning on how fast it happened. As you all know we have been trying to get him one since April of last year but ran into roadblock after roadblock in Arizona. Just when we thought we were going to get it CRS (children's rehab services) pulled the breaks and made us start over again. That news came weeks before we decided to move. So after getting Landen insured here we immediately started the process of getting him one here. We got and appointment with the Audiologist who would do a CI review. I went into see him February 5th. I got there and told him Landen's story and showed him all the testing we already had done that showed he was a good candidate for CI. He listed to everything and he looked at me and said all I left for him to do was sign the paper work. I asked him what the approval process was he said "are you ready for this.... I sign the paperwork and you call the surgeon to schedule a date" I couldn't believe it. Technically there was two options for us we could go to Primary Children's in Salt Lake and get it done but we would have to meet with the review board (which he was a part of so he knew we could get approved right away) and get the implant done there. But the review board only meets once a month to review applications and interview families who's applications were approved last month. And they already met for February. So we would get our application approved in March then we would do their required appointments and interview in April then we would schedule there but since they do more CI's they schedule out and it takes a little bit of time to get in so he said we would be looking at early June for surgery. But if we chose to have it done at Logan Regional we could do it immediately as soon as the doctor could schedule us in since they don't do as many CI implants their they are wide open. Plus if we chose Logan we could have all of our follow up appointments in Logan instead of Salt Lake. Logan Regional is twenty-five minutes away Primary Children's is an hour and a half away. So we chose to do it in Logan! The next week we met with the doctor who would do the surgery and he approved everything and ordered the implant and scheduled us for March 13th! We would do it sooner but he is going on vacation so we had to wait a few weeks. We are so excited!!

As for the rest of us... Scott is getting board of being at home all day and wishes he had work but does enjoy being free to spend time with his family. He is loving the snow and wishes for more excuses to be out in it... I'm enjoying spending more time with my family who all live around here. I love being back in the community that had such a great influence on my life growing up. Seeing people at church who helped me grow strong in my faith and supported me through the tough "growing" years. Spending time with friends I love and missed so very much... Brayden is attaching himself more and more everyday to "PaPa" (my dad) I'm sure when we finally move out PaPa will have to come with us. He is talking finally saying real words and more of them each day. He's becoming a little too attached to his TV shows. But also knows how to have fun playing with mommy and daddy. He is also growing into a moody toddler. Its the biggest struggle in our home right now but we are teaching him that no means no and we are not going to give in at bedtime!... My parents are adjusting to having us here as well. Although my mom may think I'm a little too pushy and obstinate trying to change her eating habits to better fit her diabetes and demanding that the floor be clear and mopped every day so Landen can crawl on it. But even with all this she realizes its all for love (I hope) and she puts up with me!

So truth is we are settling in and we know that we have made the best decision for our family when it came to packing us all up and moving here. The blessings of listening to the Lord's promptings are continuing for flow in for our family. Everyday we are grateful for everything that Landen has here and no matter how long we have to "budget" and "tighten out belts" while waiting for the job to come we do not doubt that we are at the best place for our family!

Happy Valentines Day