New Doctor and Updates

It seems like I need to update with words today, huh? No more photo bombs for now! It's been awhile so let's just do the "I'm too tired to work this all out in my mind, so let's just do bullet points" style. Ready, GO!

- We met with a "new" endocrinologist, Dr. L. I use quotes with the new because he saw LB when she was 4 months old and diagnosed with prolonged jaundice and hypothyroidism. He was so, very apologetic about not catching the PHP when he saw us and started spouting off some medical terms that I didn't understand. Something about one blood level being high in PHP kids but in LB it was low and so he didn't catch it - whatever it was I kindly patted him on the back and told him not to worry, just to learn from it. And of course, he got this weird-medical-mystery-gleam in his eye, "I certainly have!"
We discussed that as her most important doctor (not most loved, Dr. S, that's you!) that he needs to collaborate with other doctors in order to find the best treatment and/or answers for us. He wholeheartedly agreed.
We also talked about the fragility of LB, which always takes me off guard. The fact that she can crash at anytime and what to do when she does. We went over the emergency shot, which I'm always grateful to go over. We talked about the fact that she has the adrenal inefficiency + DI which puts her at a greater risk for a crash and thus "sudden death" (seriously, his words, not mine.)
I quickly grabbed LB off the floor and snuggled her while trying not to cry, scream, beg him to stop. Yes. I know these things. But when I look at her - I have stopped seeing this frail baby that frightened me so much. I have stopped living my life with the ever-present fear that she will crash and I will fail her. Maybe I have accepted that it will happen one day and that I will know what to do because I am prepared - or as well as I can be.
*deep breaths* We also talked about her growth hormone being a bit low - and after confirming that with blood tests, we upped it quite a bit. We  have been asked to check her blood sugar each morning and have confirmed that she is hypoglycemic in the morning again with her blood sugars ranging from 62-74ish. Even after upping it this past week, her blood sugar was still an alarming 62 :( I'll do a bit more checks and then get back to Dr. L.
On a side note, LB now reminds me each morning to check "blood sugar, mommy." and gets out of bed to hand me her black bag with the glucameter. She then proceeds to pick a finger out and holds it out to me, "this one, mommy" It's sad, but cute, and she no longer cringes when the needle clicks into place.

What else.

Oh. Good news here too, our appeal is sent in! Out of our hands again! We acquired a lawyer thanks to our good friend, LK asking around at her old-new again work. We were turned down by two lawyers but the third time was the charm and this last lawyer took our case. I was so thankful and it took everything in me not to cry when she said she would take our case!
The appeal was just the same as when I appealed before but I guess this time we'll have a lawyer on our side and hopefully that will be enough for them to push it through. If not, this is going to court...ugh.


I'm drawing a blank. I think updating on the new doctor kinda took all the wind out of my sails! But in an overall update, things have been going great here. LB is eating tons, walking, running, talking up a storm! She speaks in sentences and asks a lot of questions. She's obsessed with arrows, stop signs, bob marley's "three little birds" thanks to Marbles, and she is SO close to jumping. She jumped yesterday for the first time but landed on her bum - still super cute!
As for sleep, it's still pretty good. We're still thinking of breaking the baba sometime soon...and dread it greatly. I value my sleep SO much and this is going to throw a huge wrench in the good that we worked so hard for. We also need to push bed time back from 730 to 830 because we have been fighting with her for 1.5-2hrs the past two nights to get to sleep and that's more tiring than just keeping her up! And she sleeps until about 6/630, gets up and gets her water and lays/plays around until I come in and get her around 7/730. I've been playing around with naps and putting her down between 11-1 and she sleeps for usually 2 hours still, usually longer the later I put her down.


So that's it for now. I'll update more when I think of more. I'll keep y'all updated on the appeal!