Wow, update

It's been a while since I updated what was happening around here, and I think if you've read my last post you may have gathered, I've been doing some sole-searching as to do I carry on or do I just give up and not post anymore. If I don't post there's no information to take and use elsewhere.....but in not posting I am also losing the ability to share the reality of having a premature baby, with long term issues, and that is far more important to me, than some sad person who needs drama. So I have decided that I will continue to post, so sorry folks your stuck with me for a while longer!! And to Kristin and Jenny, thank you.

So, what can I tell you?? Michael has been seen by the SALT, regarding his stammer/stutter or to give it it's correct title, Dysfluency!! So there you go another label to hang around Michael's neck!! The SALT who specialises in Dysfluency, is working with the SALT in school at the moment, and has given her some suggestions and ideas to work on to try to improve the stammer!! She's then due to see him again in about a weeks time, to see how things have improved. I have to admit things do seem to be slightly better, but oh boy when he gets stuck, he really gets stuck!

When I spoke to the SALT at school I asked if she'd received a request for a feeding study, from the Resp, that was sent 6 months ago......guess what??? She hasn't.................

She has now though, because I sent her a copy of the letter!

We still don't as yet have a date for surgery, but we did get a letter to say we are on the waiting list, I guess I should ring to find out how long the waiting list is!!!! (I just haven't got around to doing that yet!!) Because then at least we'll know what the chances are of him getting to the top of the list, in the middle of some of the things DH has planned for this year!

Michael is also going to be taking part in some research into the long term effects of Retinopathy of Prematurity, or ROP as it's known around these parts! ROP is a condition which affects the eye development in premature babies, and means the blood vessels grow in places they wouldn't normally grow in the eyes of term babies. Michael had Grade 3, stage 3 ROP and narrowly avoided needing lazer surgery. Anyhow we have been asked if Michael could be tested as part of this research, so we have agreed, and once he's had this done it will then be appointment with the Resp on the same day! Last resp appointment was awful, so DH is coming with me, hopefully he will be able to keep Michael under control while I talk with the Doctor!

We also received a letter in the post from hospital z, remember my post about going all the way round the houses in order to be seen in the hospital we wanted to go to?? Well the Paed has referred him to hospital Z, which is a children's hospital so therefore has Paediatric ENT's. So I received a copy of the referral to the ENT dept, but as yet haven't heard anything from them.

We also received a form to fill in, for the Dysphagia Clinic, at the same Children's hospital. So I shall be posting that tomorrow, not sure how long it will take for the appointment to come through.

We're having a bit of a weight issue at the moment, and this is probably going to seem silly, but weight gain has always been a major issue with Michael, he just didn't gain weight....even with a g-peg he still didn't gain weight. Until about a year ago, when he suddenly started to put weight on, which is awesome as far as we're concerned, mind you he was on major calorie intake!!!

So the dietician, concerned that he was putting on too much weight, changed the calorie value of his formula, and since she did that Michael has been losing half a pound a month. At the moment it feels like we are undoing all that hard work to get weight on him. I'm not happy, but I seem to be the only one who's concerned about it!

Oh and to top it all off, with the weight loss seems to have come this!