Leeland ❤️

Wow, where do I begin.... 

  

   We have been going 100 miles an hour it seems, life has really just been flying by. And it seems like every time I think about writing, something else happens. I don’t know about everyone else, but being a Mom is exhausting lol. Whew!! 

   Let’s start back in December, day after Christmas. Leeland had a scheduled hearing test, and it was determined he was unable to hear at a normal level. Right after that appointment (same day) he saw the ENT who determined leelands hearing issue was due to retained fluid in both ears. No infection, which meant he would need to get tubes placed to constantly drain both ears. Leeland has a speech delay which has also been a side effect of the fluid build up in both ears. So we set a surgery date in January for tubes and then a month after a retest for hearing. 

  January 15th came and Leeland did awesome in surgery. Almost immediately after surgery Leeland could hear things he couldn’t hear before. And we knew this because he would cup his hands over his ears, for certain noises. And when we called his name he would respond on the first call. The whole time we just thought he was choosing to not hear us, because well..... kids.

After the next few weeks he seemed to speak more and clearer. He would say words he didn’t before. 

  His next consultation was February 5th, With a Psychologist. As you all know Leeland has NF1, and with this he has a lot of appointments across the board. We have to go through and check a lot of boxes. So he saw the Psychologist and she determined, Leeland has a cognitive developmental delay and a speech delay. Which is to be expected in NF patients, it’s something we have learned along the way. So we set up a speech consultation for him later that month. But before that Leeland had a post op apt for his tubes. and a repeat hearing test which he passed with flying colors!! So exciting! He can hear!! The ENT had a look at his tubes and said they look really good, the fluid is draining well. Yay!! Good news! 

  End of February he had his speech consultation which was determined that he DID NOT need speech therapy. The tubes have helped him tremendously, he does have to catch up a little bit but that does not require speech therapy! Another win!! 

 Leeland next appointment is his yearly Meeting with the Geneticist. It’s a yearly NF apt, she checks for any new lumps or bumps( fibromas) and new birthmarks or any major changes. Leeland does have two fibromas (small ones) that do not seems to be harming him. He has had headaches more frequently this year and his left eye seems to be drawn in a little more than usual. (I’ve written about his eyes in the past) Leeland also slobbers a lot for his age. He bruises easier and falls a lot. Again, with a person that has NF1, these are all signs that there is something more going on with him. Something we can not see, something Neurological. So we scheduled an MRI for Leeland in April, which we just did last Friday. And we are anxiously waiting on those results. [update] We got the call about leelands MRI results and it was determine he DOES NOT have any brain tumors, and NO optic glioma. Thank God! 

There were some other results that I won’t write about till we know specifically what will happen. Which we will go over at his May 22nd appointment. And I’ll update about that at the end of the month. But as of Now, we are at a really good place with Leelands Health. And we are so Thankful! 

Leeland will have an ophthalmology appointment May 17, and I’ll update about that at the end of the month as well. 

May is Neurofibromatosis Awareness Month,  as you all know there is No cute for NF. So if you remember, please keep all the families in your thought in prayers as they continue to fight for a cure. ❤️❤️