Finally- we finally heard it yesterday! A clear MAMA! Steve and I both looked at each other eyes wide open and said – he said it! Dada has been easy for lil P to say but Mama has been difficult. I guess when kids have some hearing struggles M’s can be tough. He’s said it a couple more times with the m’s sounding more like baba’s but he says it in my direction. His vocabulary is expanding even though much of it sounds muffled. We can understand him but most everyone else cannot.
His walking is getting better with every step. He still holds on to our fingers or crusies along the furniture as his balance is still rocky. He has a gait trainer (sort of like a walker) that he holds onto and can use to walk as long as someone is “manning” the back. He wants to run!! It won’t be long. We feel that once he gets his confidence and balance it will be game on! He is starting to want to navigate the stairs and made it to the top with me behind him and Steve at the top. Our stairs are very steep so the gate will now remain closed at all times!!He has been taking more food by mouth and eating roughly 4oz of thickened pure at a time as oppsed to the 2.5oz he was doing before. He needs a lot of distraction but he’s eating. He won’t take any solids yet- even though he puts everything else including his speaking valve- in his mouth. Noooo.. wouldn’t want to take a taste of a chip! 🙂 He does like to lick the cheetos and chips though.
We’re in the midst of his IEP process for preschool potentially starting after he turns three. It’s going to be an interesting gruling process I’m affraid. Already we were told that the school nurse will evaluate Porter and they will determine if he needs a nurse with him or not. Um- No- he NEEDS a nurse and will have one with him and it WILL be one from our nursing company- not some random nurse who knows nothing about Porter. The battle – one more of many- begins.
Porter’s nursing situation has been difficult enough as it is lately with staffing his nights. We had one replaced with a nurse who they felt would be a great nurse for Porter – well that was a disaster and she didn’t last one shift. It seems she got her feelings hurt when she was confronted about being late. Humm- let’s see – how do you think the parents felt knowing Porter didn’t receive any of his breathing treatments overnight because the machine wasn’t even hooked up. Since she signed off that she had given the med the nursing company took her word for it- despite the fact that I physically saw it was not being done. Fantastic. Another night nurse gave notice two weeks ago and is now done because she is moving – we are sad to see her go and we begged her to stay. They sent a nurse out Friday night who has cardiac nursing experience, peds experience, hospital experience and who was going to be on Porter’s schedule 3 nights per week. He lasted Friday and when I got up this morning the nurse who was orienting said he left at 5:30 because “he couldn’t handle it”. Evidently home health is not what he thought it was going to be. Really?? Wonder what he thought it was going to be. All butterflies and roses? Even though kids sleep through the night – there’s stuff that has to be done. SO to say we’re frustrated is an understatement. And the only nurse we have who can orient is out of town next weekend. The nursing company keeps telling us they are understaffed and trying to get nurses in. Could we try to bring another nursing company in- we could and we have tried this before but they weren’t able to provide us with anyone. Insurance puts another wrench in it as well with some changes that have been made. Will we get through it- yes- we always do. I certainly have an abundance of studying to do – may need toothpicks to keep my eyes open- Steve is managing work and extra help with Oliver and Porter and the house while I bury my nose in the books. If the schedule stays as it is this week, we have 58 hours of open shifts. Hopefully they get this straightened out soon!