The Hanna Family

Mr. Hyde has returned with a vengeance. Bless our Jonah. I was on the phone with the GI Clinic this morning trying to figure out what could possibly cause him to be in so much pain at night. In doing process of elimination, the only thing that has been newly introduced has been the Lactulose so I am trying to get them to agree for the time being to switch him to the Miralax laxative.

They are making yet another appointment for Jonah to go in on the 14th of August. I guess our GI doc is on vacation until October so the next couple of appointments will be with the PA. Hopefully she will be helpful. I think with this next appointment they will order a new set of tests.

We still don't know if he has a dairy intolerance. I want to switch him to a soy formula but the nurse did not seem to be pushed to do this yet. If the soy formula doesn't work there is a formula called Neocate but oh my, it is expensive!! So hopefully we'll find the solution not to be something that will break the piggy bank.

I hope to hear back in the next hour or so from the nurse. I want to get this Miralax ordered soon if they agree to try him on a different laxative as I told the nurse we can't live like this for the next week and a half until we can get in to the clinic. Jonah is horribly miserable and just screams and screams for hours.

The only thing that comforts him is a warm bath but the second we take him out he starts up again which in and of itself tells me it is GI related.

We hope to get this resolved soon, soon!

GOOD NEWS (I must emphasize this as sometimes I feel like we have so many challenges that the good news is slow coming): Jonah is making progress with his head control! I have been trying to work out 2-3 times a day with him and this coupled with his surgery, which I know has helped his vision, have helped him make some serious progress. His therapist was so happy this morning and praised me for what I am doing (it is nice to be praised as sometimes I get so saddened that I am not doing enough and not making a difference). She said all we are doing is helping him progress. I know his surgery helped, his eyes are still not perfect BUT they are better. We need to keep working on his left hand as he has a tendency to keep it closed when grasping for objects. We knew this was the side of his body that would be affected as the most severe bleeding was in the right lobe but as our therapist reminded me today, thank goodness for things like neuroplasticity! (Neuroplasticity refers to the changes that occur in the organization of the brain as a result of experience. The concept is that neuroplasticity pushes the boundaries of the brain in response to changes in environment. This is why early intervention and lots of good stimulation are so important in high risk infants).

Also, I asked about aquatic therapy and she agreed that Jonah would really enjoy and benefit from it! I'm pretty sure our insurance won't pay for this plus PT but the local regional center will cover the cost so we are getting paperwork processed to start Jonah in aquatic therapy. We also are getting a referral put in to our insurance to start occupational therapy (most likely will start up in September as I guess Terrio's main OT is on maternity leave until then) and I told Jonah's therapist today we need that second PT appointment every week. She is going to try and work with us but I think we'll end up with a different therapist for the second appointment as Karen is so overloaded (they are short staffed and trying to recruit additional therapists).

So amidst all the craziness this week we have had some very good steps of progress, small steps yes but nonetheless steps of progress!

Hip hip hooray!!!!