My Happy Boy!

Hello all.  It’s been a while since I posted last.  A lot going on and a lot of stressors too.  I’m trying to handle everything in stride.  Trying, being the key word.  Anyway, enough about me.  I know you aren’t here to “listen” to my complaints.  You are here to see how sweet, little man, Noah is doing. 
Well, to not keep you in suspense, he’s doing very well!  He’s crawling EVERYWHERE and we can’t keep this boy still no more!  The only frustrating thing so far--he’s obsessed with the dog’s food and water bowls, so we have to remember to put the bowls on the counter when our little crawling tornado is on the move.
Noah can now pull himself up too.  It just warms my heart to see him try and WANT to try.  His physical therapist is wonderful with him and most of the time, it seems, after she’s worked with him on something new like pulling up or how to get himself back down, it’s not long before he’s doing it on his own!  We don’t have to practice with him much.  Within the next week, you can see him really trying what he just learned and he tries until he masters it! 
Yesterday he saw a new nephrologist (kidney doc) at TCH.  Reason for new doctor?  She is VERY knowledgeable about Lowe!!!  I have to say, it’s so nice to ask all the questions for once and have a doctor KNOW the answer!  It really is a big deal when you’ve seen doctor after doctor and every time, have to explain what Lowe Syndrome is, or what you know of it so far and have them “guess” at the best course of treatment.  Even though I didn’t really learn anything new yesterday, it did help to ask questions that confirmed things I thought may be the case with him in regards to the syndrome.  It’s nice to know the answers for once.  I’m really thankful we got to see her yesterday.  I have to thank a fellow friend for telling me about Dr. Eileen Brewer!  She was so right.  Not only was she excellent but she also reiterated what my friend told me about her.  Dr. Brewer said yesterday that normally she wouldn’t take new patients because she already has an over-extended schedule.  However, if she hears about a patient that has Lowe, she will make the time.  I appreciate that so much and it helps to know there are doctors out there that do really care about patients and want to see them live as happy and healthy as possible. 
Before our visit with Dr. Brewer was over, she also mentioned how happy Noah was and actually expected him to be hard to examine.  She said boys with Lowe tend to have “stranger anxiety” and don’t like to be near strangers.  In Noah’s case, he smiles that killer smile at just about anyone he encounters!  So, that was nice to hear.  However, she also mentioned that he could still grow into that phase.  You just never know.  Hopefully, that won’t be the case with little man.  He’s just so darn sweet and his smile can melt the hearts of an entire room.  I know I’m biased but it’s not far from the truth either!  I’m so glad that he didn’t get any new medicine.  Doctor didn’t feel he needed anything new or to change his current med’s.  Hard enough to remember his three oral med’s and two eye med’s, he gets daily.  Surprisingly though, it does get easier over time. 
Well, that’s where we are at the moment.  Hard to believe in just a few short months, Noah will already be two!  So proud of my little man and excited to see what he accomplishes in the near future!!  Love, love, love that boy!
Stay in the moment,  
Jenna