Everyday stuff

Apologies to everyone. I have been wanting to update this for some time now. I have just been so busy at work that when I come home and still have my home full time job, the last thing I wanna do is get on the computer, but things are slowly getting a little less hectic so I am gonna try to update a little more often. I actually started this post on July 29th...if that tells you anything.


Isaiah is doing well. He has not had any episodes of desating for a while now. I think the chronic lung disease is still an issue, but his O2 reserves have increased somewhat. I only know that because there have been a couple times that his oxygen tank has mysteriously been off and he didn't start screaming like he normally does. He will be having his second cardiologist visit since discharge and so far things look good. At the first appt, it was noted that he had developed a hole at one end of the patch that was put in during his open heart surgery. Dr. C says this is common and should close once tissue begins to develop over the patch.


We had our last NICU followup appt a few weeks ago. We will miss them. The Drs there are awesome! We will see them again at the NICU Reunion coming up later this month. We have seen a pulmonologist and will continue to follow up with them for Isaiah's lungs. We also will be seeing the following: Dr. from Specialty Care that will assist in coordinating appt between the various specialists in Children's Mercy including a GI specialist. We see two different therapists (OT/PT). One comes to the house every two weeks, the other we go see at Children's every couple of weeks with a Nutritionist who comes in as well.


Isaiah has a swallow study coming up. It's part of radiology so they will be having his swallow some barium and track it to see how his suck swallow and gag reflexes are working. This will determine how often we can give him bottles and transition off of the NG tube. Possibly either using it less often, not at all, or moving to a G tube which I just heard a little more about. Not sure about that one but it would get the at least one thing off of his face.


Isaiah and Micah are both getting bigger. MJ is almost 5, 50lbs and 3'10". That's the 93% and 97% for his age. OMG...I just realized he's 2 in away from 4 ft!!!!! I just had a moment. My baby is growing up so fast. He's gonna be towering over me and Antwan very soon. Isaiah is getting bigger as well. He is 15lbs and 26 in. So he did grow 1 in from the last time he was measured which was about 5 or 6 weeks ago.


I gave Isaiah food for the first time last week. It was green beans and he did really well with them. He kept trying to grab the spoon to put into his mouth by himself. It was so cute. He's also holding his own bottle somewhat. I hold it in front of him and he'll reach and grab it. Then he opens up his mouth and tries really hard to get the nipple in. Help is sometimes needed. But he has really gotten the hang of it.

Well, it's now two more days trying to get this finished so I am just going to stop here and start on another one.

I'm tired, mentally and physically drained, spent. You name it....that's how I feel.

Thanks for your patience. Love you all!
Nite.