swallowing

Last weekend Jaren couldn't swallow any of his pills so he didn't have any pills for a couple of days, I tried opening the capsule and putting it in applesauce without him knowing, I tried putting them in milk, chocolate milk, pudding, nothing was working so I finally went to Walgreens and got some spray stuff called pill glide and sprayed it and he got most of them down.  With it being on a weekend I couldn't call a gastroenterologist  because he is not an established patient, I did call the family doctor and they told me to take him to the ER but I really didn't want to sit there forever, I decided since he was able to swallow most of them with that spray that we could wait until Monday.  I called first thing Monday morning to a GI doctor and they didn't have any openings until July 29th, yes that says July.  I took the appointment and asked them to put him on a cancellation list and they called on Wednesday and they had an opening on Thursday so I took the appointment and I am so glad we chose the one that we chose, he was so kind and so honest and he told us right from the beginning that he had never heard of MLD and he will have to research it to know what to do.  He did order an endoscopy and they have to put him under anesthesia for the procedure so I hope he does well.  He said if that all comes back normal they will then do another swallow study and then go from there.  I asked him about a G tube just for meds and he said they want that to be the last resort but that if he is aspirating with food and things that we will keep that in mind.  I told him that I know eventually he will probably have to have one and I don't want to be stuck not able to get into a doctor for a month and a half he told me that now that he is a patient it should be easy to get into them.  

Braxton had Cub Country this past weekend and Friday he came home with a sore throat and as the night went on he started getting a fever, I took him in just in case it was strep and he had to have 2 strep cultures and they both came back negative I still haven't heard if they have come back from the lab yet for the longer culture. He was very upset that he didn't get to go to Cub Country on Saturday but he laid in bed all day Saturday and half the day Sunday he is finally feeling normal.   I was up all night with him Friday night and then Saturday night Jaren was up all night because he couldn't feel his feet at all and then he started crying because they hurt so bad. I don't know what to do for the pain.  

I guess I wasn't done with sickness

I thought we would get over everything, boy was I wrong.  RaKelle finally got better and then Ashlyn came down with croup, and Braxton got strep, and that same day RaKelle came home from school with the stomach flu and missed the last 2 days of school, I got a little bit of the stomach flu but it only lasted 1 day, thank goodness.  I am so thankful that Jaren has not been sick.  I had a horrible cold but I am much better.  I thought maybe we were in the clear and then Braxton woke up with Pink Eye.  Now hopefully we will be done and enjoy our summer.

I have enjoyed being home so far this summer, I was not allowed any hours this summer and I was praying that I would get to work at the school again in the fall.  I got a call on Monday asking if I would be willing to come back and work as a k-3 classroom aid! yeah I can't tell you what a relief that is for me to know that I will have a job again when school starts.

RaKelle is still really struggling with life but she is able to tell me when she needs to talk and she is very open with me and their new counselor is really good and they like him except for, Braxton is having a hard time with the change but I think when they build up their trust he will be fine with him.

We were able to go to the Sweets candy factory for a free tour and it was so much fun and it was really cool to see how they make the delicious candy that we eat! Jaren loved it and he didn't complain one time which is different for him, he usually complains about everything.  They gave samples of a lot of different candies and they were all so nice.  I hope that we can do some more tours this summer, at different places.  We have kept ourselves very busy so far we haven't had a chance to even sit down and relax, but it is fun.  I am trying to get my house completely clean and go through everything but spending time with the kids is a lot more fun so we do a little bit each day before we go do other things so it will get there but who knows when.

The aide coming in 3 days a week for about an hour for now is wonderful, I have really enjoyed getting to know her and she is really fun.  She is good with Jaren and if he doesn't want to shower and things she says ok we will just sit and talk or play nintendo and then she comes back 2 days later and he gets in and she helps him shave and he is doing so much better now that he is clean most of the week, he won't always change his clothes but that's ok, that is not a fight I choose to have so I just let him wear whatever he wants.  He still enjoys going to the center and now that it is summer I get to spend the entire day with just the kids and we don't have to worry about Jaren staying home alone, or having to come home and check on him.

Hopefully now I can say that we are done with illness for awhile and we can enjoy the rest of our summer!!