What a week!!!

Last week was an incredibly long week for us. Monday was Landen's AFO (Ankle-Foot Orthosis) evaluation. It went well the orthotist wasn't sure what kind she was going to recommend until she had a chance to sit down with Landen's PT but she decided to cast him for them anyway. They wrapped up his legs in a quick drying cast and held the feet in place till it dried... surprisingly Landen LOVED IT! Even more surprising when she fired up the saw and started cutting them off he loved that even more! He laughed and giggled at the vibrations on his feet thinking it was so fun... I'm guessing considering how much he liked the whole experience that teaching him to wear them all the time will not be too hard.

Wednesday was an incredibly long day for us. We knew we would be out of town for most of the week so we crammed everything into one day! Not the wisest choice I have ever made. I stayed up all night cleaning and packing for our trip to Vegas and managed to get almost everything done except on little thing... SLEEP... Landen's had OT scheduled at 9:30 in the morning in Kingman so it was an early wake up call for us. The new OT worked with Landen under the supervision of the old one... I'm not sure how this is going to work out. She is very inexperienced and has a lot of training to do before she takes over. But its not just that Landen is generally a very happy and loving baby but there is some people that he just connects with right away that he doesn't need several visits to warm up too. They work well with him and are able to keep him very focused. Ms Stacy (the old OT) is one of them... this new lady is not... Landen doesn't like her much and would prefer to play somewhere else then with her and that makes it very hard. She spent most of the appointment trying to draw him into play. She is very unsure of what she is doing in the first place and add that to the fact Landen just didn't warm up to her and we didn't accomplish much. The last few minutes when Ms Stacy took over were the most productive of the whole session!

That same day immediately after we finally had Landen's speech evaluation. Unfortunately I misplaced Landen's hearing aids on Monday after his appointment with the orthotist... I searched everywhere for them!!! The evaluation was just a bunch of questions like every other evaluation is they are hard for me. The constant can he do this and can he do that most of which is no is just one more reminder of this awful disease and how much it is taking from my little baby.

Then it was home to yet another evaluation. This one for the state "Long term care" program. Landen is now covered through my husbands insurance but there are things that wont be covered and we still need help with them. We had applied once before and though Landen has many disabilities no single disability was enough to get him on and they refused to look at his condition as a whole because we didn't have a diagnosis to link it all together. Silly I know when you are looking at a child with significant hearing/vision loss, physical and mental retardation, low tone issues, not walking, not talking... a child you can look at and see that there is something wrong... and yet they can say sorry your child doesn't fit our definition as long term disabled simply because he is "undiagnosed". But now he is diagnosed as helpful as it is its not a win for us. These questions hit me even harder. They just redid the evaluation forms for children applying for long term care they are now more "age appropriate" questions suited more to a 2 1/2 year old rather then a baby. There were very few "yes" responses to the "can he...?" questions. It really breaks my heart. Sometimes its easy for me to... how do I put this... not forget... but push it out of my mind how delayed he really is. When he is around children his own age its all I can do to not break down right there because the difference is so plainly obvious. But when its just Landen in a room playing and laughing he is normal to me. I see where he has come from and how much he has grown and am proud of him. Because of his small size others don't always recognize right off that he is severely delayed they also think hes 18 months younger then he is. Its not until they compare him with their 3 year old or their 2 year old granddaughter that people realize that something is wrong. I get questions all the time "whats wrong with him" or sometimes something a little more tactful but you can be surprised at what complete strangers will say. Most days I just say he has a rare genetic disease. Which most people will let go others start to pry... these people I'm not sure how to deal with... most days I calmly answer their questions trying to not get to involved in the details. (like they really want to know anyway) There are a few that have caught me on a bad day and got a tear filled reply that hopefully will make them think twice about being so intrusive! Sorry I didn't mean to go off on such a tangent... sometimes it surprises me what comes out when I'm typing.

After all this was done on Wednesday I packed up the car gave one last effort into finding Landen's hearing aids and headed toward Las Vegas to meet my family there! We were all coming down for my oldest brother Mike's wedding. Even though he is also living in Utah like the rest of my family he decided to have a Vegas wedding for my convenience (I'm sure that was the reason even if he didn't say that) Although we left our houses at the same time I arrived at the condo HOURS before my parents. It may have something to do with the fact I only live 90 miles away and they live 400 but I prefer to say its my amazing driving skills. It was a cold and windy weekend (Landen's favorite weather) so we didn't do much swimming. I had a fun night out with my siblings that are older. And Landen and Brayden enjoyed all the attention that they got from everyone. It was a nice wedding and we are happy to include Kristy and her daughter Samiya in our family! It was so nice to be with my family and almost all of us were able to come. We got to swim a little and Scott and my Dad jumped off a building together. They are crazy if you ask me! But in all it was a very nice trip..... oh I finally did find Landen's hearing aids, we were at breakfast getting ready to say our goodbyes and go home when I was clearing out my camera bag making sure I didn't miss anything and pulled out two little blue hearing aids! Apparently I had them with me the whole time!!!! I have no idea how they got there either!