The Hanna Family

Noah still has his yucky cold. We actually got him down to 1 liter yesterday during the day and he did well but last night was exhausting. We were up and down because he was very restless last night and every time he moved his Pulsox was set off, plus he was sleeping so deeply that he was saturating again in the low 90's/high 80's. We turned him about mid-morning to 1.5 liters again and he kept doing the same thing until finally at 4:30 in the morning we gave in and put him through the ordeal of suctioning his nose (he hates this more then ANYTHING). I got out a decent plug from one nostril and that seemed to take care of the problem. He is back down to 1 liter today but he definitely sleeps much more deeply at night and that is when we have more problems with his desats. He hasn't run a fever and aside from yesterday taking a couple of long, afternoon naps he is his normal self (aside from some minor congestion).

I keep praying this is the worst of it. Hopefully come Monday Noah will be feeling 100% better. I keep dreading the upcoming winter months as I can't imagine what will happen to his oxygen needs if he does develop pneumonia. We are hoping with continued isolation and the RSV plus Flu shots we'll keep the boys relatively healthy through the upcoming months.

In other happenings, Jonah had his helmet casting today!! We are expecting his helmet to arrive in the next week or two as it is made out of state. The orthotist did say that Jonah's head shape is the most difficult to reshape so he predicted Jonah would be wearing his helmet for close to 5 months and could easily go through two different helmets during the process. Just one more crazy thing to add to our list of appointments. I keep hoping I don't go insane with all these appointments coming up in the next few months. It's going to be a bit nuts around here but hopefully we will manage!

Supposedly we have a second weekly PT appointment lined up to start August 26th. Although today I found out our therapist is starting some management seminar on Tuesdays and she is trying to find a sub to take her Tuesday appointments so after all that we may actually have to fight for a second therapist appointment every week. Terrio has got to get more therapists! She did say they just interviewed someone who will be starting soon but they have a serious shortage right now!

I have been disappointed in Jonah's vision therapist. She is young, no degree and I really feel that all she does is come to the home and play with Jonah which is something I could be doing on my own time. The micro-preemie group I belong to shares notes all the time and one mother that I am particularly close to sent me a stack of notes/therapy suggestions from her vision therapist. It was then I realized how little ours is doing. I am supposed to have a home therapy plan (although our PT just finally got me the boys but I always talk to her about what I do at home and ask lots of questions about things I want to improve and what can I do, she has always been helpful but this is the first time she actually put anything on to paper), goals to work on with Jonah as well as an ongoing assessment of his condition. I asked this gal all kinds of questions last week, including about Jonah's current goals and his progress report. We just switched therapists as she is from our area and just recently finished training but she couldn't even tell me off the top of her head Jonah's goals! Her response was, "I have the progress report and I have read through it but I couldn't tell you his goals without it." WHAT? Isn't that your responsibility? Or shouldn't you at least bring in your lesson plan or the report with you so you know what goals you are working on?

Oh my, I was so disappointed. I have had several discussions with Kern Regional as they are providing the therapy. Our case manager did say they have another developmental optometrist here in Kern Regional and if our therapist doesn't start showing a better grasp of what to do for Jonah and me then we can switch therapy. The huge down side is that of course, this individual does not do home visits. Although today I was talking to Jonah's therapist about my disappointment with our home visual therapist and she mentioned the local development optometrist and said she was really incredible. So I called Kern Regional back and talked to them more. As much as I HATE adding one more appointment out of the house to our list if I don't see an improvement with our vision therapist in the next few weeks I am going to have to switch therapists.

I just wish I had someone more advanced working with us instead of someone who has just got out of training and doesn't seem to be particularly on top of details. I want the best when it comes to therapy and for Jonah's vision we need some improvements.

I told her last week she had to bring Jonah's progress report next time as I want her to go through the report with me and discuss goals (shouldn't she already be doing this?) plus I really want to see her lesson plan (oh and get this, she told me that she really doesn't change the plan much week to week...only if she thinks Jonah has accomplished something will she change it. What? How in the world do you monitor progress? Oio!)

So that is where we stand now. I am also excited because Jonah starts aquatic therapy next Friday! Yeah! Shane has agreed to take him to the session as it is the end of the day. I think it will be fun for both. I hope too to see additional improvement in Jonah's progress with the therapy.

So onward we go. I surely appreciate friends in the local area who have stepped up and offered to help. Thank you everyone!