So the public health nurse that met with the boys a couple of weeks ago made a referral to the state funded "Medically Vulnerable Infant Program." A nurse from the program contacted us last week and she came yesterday to assess the boys. She will continue to come twice a month to weigh, measure and answer any questions I might have as well as facilitate communication between specialists and our pediatrician.
Jonah weighed in at 14 pounds 12 ounces and Noah 14 pounds. However, Noah is almost an inch longer then Jonah! I keep telling him he has to catch up to his brother in weight! He is our long, skinny boy!
I was actually a bit disappointed at Noah's weight gain but we continue our battle to fatten him up. We are now attempting 35 calorie formula (with the Benecalorie booster) to see if we can't get him to gain a few more rolls. Of course his oral aversion does not help matters and we just keep working through things but some days it seems all we do is try and get food down that boy!
The nurse was actually really impressed with both boys. She said she almost thought they had to be 28 weekers because she was so impressed with their capabilities and how they looked, etc. She even commented more then once that she could not believe Jonah had a grade IV bleed as he was pretty much babbling the entire time she was over and chewing on his thumb. She mentioned that from what she has seen with the grade IV bleeds she really was impressed with what Jonah was doing, yes he had his delays but he was kicking his legs, babbling, chewing on his thumb, picking up a rattle to bring to his mouth and so on and so forth.
We really are so excited for Jonah. Yes, he still has a long ways to go but he has made good progress! He has even started to smile more and babble more at us since his surgery, I know the extra vision has really helped stimulate his senses which is wonderful! He grabs for things more (bangs at things a lot) and gets so excited over things! He still doesn't focus perfectly straight all the time and I do worry about the lack of dilation with his pupils but I am going to ask about this tomorrow when I go to Fresno to meet with his specialist. I also think glasses would really help him so I am going to ask tomorrow again about getting him glasses. We hopefully start aquatic therapy soon as we just got the paperwork today. I think Jonah will love this!! Shane is going to try and take him since it is end of the day. Once Noah is off oxygen and more hearty hopefully we can start him too. Our lives are quickly becoming very busy, by September Jonah will have PT (hopefully twice a week working on this still), OT at least once a week, Aquatic Therapy once a week as well as vision therapy (not that impressed with this therapist but more on that later).
I am supposed to hear from the Occupational Therapist in Fresno to schedule an assessment for Noah but I have not heard anything in the past few days so I may need to call on that this week.
Noah has started arching his back and pushing himself up to his knees and hands, one step closer to crawling! We still need to work on him sitting by himself. There are always goals to work on!
We tried Miralax over the weekend and Jonah does seem less fussy at night but he didn't poop for nearly four days (I am sure the switch in laxatives did not help) so today he got a suppository but it seems like things may be back on track (hopefully) from this point forward.
It was great hearing such positive feed back yesterday from the nurse. Like I said, it is hard to remain positive some days and you wonder if all your blood, sweat and tears are really making a difference.
One thing I have learned from my good husband and all our close family members, we can't stop believing in the boys' capacity, especially Jonah. Even today our physical therapist was saying she has seen children with grade IV bleeds walk and that we must not stop renewing our hope for Jonah. Again, early intervention/stimulation as well as that all important Neuroplasticity play big roles in outcome. I was talking to my father the other day, who is always a great moral booster, and he was saying that he has the highest of hopes and thinks of Jonah like he would any other baby boy. I agree. I won't give up the hope that Jonah can accomplish great things. I treat him just as I would Noah and have the same expectations and I know this important!!
So onward we go, I will update the blog after tomorrow's opthalmologist appointment.
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