Update on my boys

Kim777

We have had two ECI evals this week, so I figured I'd update!

Wyatt - He actually didn't qualify for ECI, but it was a great experience. They were very nice and helpful. He is somewhat behind in all areas and just barely doesn't qualify. If he isn't sitting in a few more weeks he will, so we have them scheduled to come back out at the end of March. They did give me some suggestions on how to work with him. She said there are obviously no guarantees, but she doesn't think he has CP. She said the strange posturing stuff is concerning, but since we don't see it all the time she is really hopeful that it is just related to prematurity, although it may have to do with his vision. His eyes cross a lot.. He doesn't even attempt to balance himself when in a sitting position, so some sort of vision problem could be causing the delay. We are going to a pedi eye doctor for an exam. He was on O2 for 10 days in the NICU so he will have a test done to see if that affected his eyes. He tested really low in the adaptive behaviors area, which has to do with sleeping and eating. He has some developmental delays with regards to eating solids, so I have to work with him to try to train him how to position his mouth and tongue to eat. She said again this should just be related to prematurity because his mouth is not actually hanging open or anything. He just thrusts his tongue still. All in all it did make me more hopeful that this is all stuff he will grow out of and nothing serious.

 

Mason - He is speech delayed and will qualify for ECI unless he just suddenly catches up. The speech therapist could not tell if this is hearing related or if he is just delayed because he focuses more on his motor skills. He did not respond at all to his name being called or to her clapping loudly near him (whereas Wyatt did), so that scares me. He could just be distracted, so we need to do a more scientific test than clapping. He is going to see a Pedi ENT and they will look at the structure of his ears and do a hearing test. Then ECI will come back out and evaluate him again in a month. If this is just his personality, if he is focusing on other things, etc. then the delay is no big deal and he should catch up eventually. If it is hearing related then obviously we need to address it to give him the chance to catch up.

On the insurance front it was a rough week, but we may have worked some of our issues out. I called the GP's office to ask for a referral and one of their office staff was a total witch to me. She told me that they would not give me an out of network referral (which I needed) and that if I wanted to get a referral to a regular eye doctor who happens to see kids then they would probably help me. Um, yeah, totally out of line and not her call. We are supposed to be seeing a developmental opthalmologist, in network or not. I called my case manager in tears and she found me the doctors we needed and told me we could ask the GP for an open referral to see our Pedi for the next 6 months as we need to (something they had not offered before). She told me to cut the office workers out of the equation, make an appointment with the head doctor and ask him directly for the referrals. He was a total a$$ to me and I was in tears yet again, but he gave me the referrals, including the one to the pedi, so now we won't have to ask every time we want to go see them. I guess that is  a small victory even if I would rather just not have to deal with the referrals at all. I'm still waiting to hear from Medicaid about switching plans: my case manager says there is no way it will be approved, Medicaid says it probably will and I have no idea what to think. Due to us being on this stupid plan the only specialists we could see are in Round Rock or San Antonio, so we are right back in the same mess as we were with the pedi initially! If they don't find anything then obviously one trip is no big deal, but if either doctor finds something they need to follow up on then I may be making a lot of trips to San Antonio. Blah.

eta: I almost forgot the only funny part to the crappy referral request visit. Jacka$$ doctor actually said to me on the way out of the room, "That one wants some booby."  I definitely did a double take. We say that all the time at home, but I don't want some creepy old man saying it to me!

rssnlvr

Oh Kim you are being such an amazing trooper!! Your boys are lucky to have such a determined, strong advocate on their side. I will keep my fingers crossed they both catch up in all areas quickly and you don't have to keep seeing specialists.

austxgrl

Oh Sweetie, what a week you have had!  You are such an amazing mom.  For the most part this all sounds very hopeful and like you are moving in the right direction.  I'm keeping you all in my prayers constantly and sending a giant hug. 

"That one wants some booby."  HOLY INAPPROPRIATENESS!!!

Abrooks

It sounds like some encouraging news.  Please keep us updated w/ the eye and ear docs.  I can't believe how you were treated.  Thank goodness you got an open referral. 

PMBridetobe

Huge hugs and I am glad you are getting some answers.  And, that doc needs to be slapped!

PrincessBrideSarah

Overall, the ECI evals sound like mostly good news.

But, uck, the insurance/doctor's office business! It's too bad you have to keep dealing with these people. You are doing a good job being persistent and getting your children's needs met, despite all the difficulties.

texmommy3

I would have fallen out of my seat if my dr. said that!

My dd has hypotonia (low muscle tone.)  She sat at 9 mo, crawled at 13, walked at 22 mo.  if you want to talk about hypotonia, let me know!  I am a virtual expert.  Natalie appears totally normal now at 4 years old (other than stubborn )

We went to Dr. Onan for the pediatric opthomolagist.  She was great!

nanann

Sounds like the boys are doing great, and hopefully an eye visit will help Wyatt and Mason's just too busy doing other things.  And just yuck on navigating your medicaid mess.

fjaril

wowsers! that's way too many hoops to jump through for the health of your children. You are a super trooper for being able to handle it all!

 

*hugs*

Emer

rssnlvr:

Oh Kim you are being such an amazing trooper!! Your boys are lucky to have such a determined, strong advocate on their side. I will keep my fingers crossed they both catch up in all areas quickly and you don't have to keep seeing specialists.

This.  You are amazing!

abbysmom1005

Yay, sounds like the ECI visit was very encouraging news.  I agree with pps you are such an awesome mom! 

If you are able to get an open referral for the pediactic opthamologist, we were really happy with Dr O.B. Jackson.

AustinAggie

The evaluations sound very promising!  Great stuff!

Boo on all the other issues.  Mean people suck and so do bureaucratic systems.

You rock!

HSartteach

I hope things work out well and the delays are minor and they begin to progress.  Sorry about all the crappy referral sh!t