Latest on my son (and a little more)

Discussion in 'Getting Started' started by McFortner, Nov 10, 2006.

  1. McFortner

    McFortner Member

    Well, he's been home for about two weeks and he is keeping me pretty busy with the feedings and having to suction out the mucus and all since he can't swallow yet. We saw the neurologist today about his seizures and the gastrologist about his stomach tube.

    The neurologist says they will probably do another MRI on him in a few months because when they did one at birth and found that the brain was developed ok but there was not enough fat between the brain and the skull. However this could be because of the problems he had with the umbilical late in the pregnancy and it may have improved by now. Thankfully the medication has his epilepsy under control and nothing is changing with that.

    The gastro said that the stomach tube is ok and they don't really see any reason to change anything right now. His feedings are going ok. They may change the type of connection he has when he gets a little older if he still has it, but I'm hoping that he learns to suck and swallow before then.

    And I had an appointment with my sleep doctor before both of these this morning too. Fortunately, they are all in the same general area. I had to spend $82 there today just for my new sleep mask for my sleep apnea and the other supplies I needed. That bites because the old insurance it used to be 100% covered instead of the 80% I was told today. But I'm calling the HR department tomorrow to find out for sure what is going on. But that $82 sure hurt.... :(

    Anyway, that is about all that happened to me today. Very busy, but I did find out for sure we could get all 3 kids in the back of our car and have them fit! ;)

  2. McFortner

    McFortner Member

    Oops, forgot a picture of Mark. Here is the latest one of him. If you look, you can see one of the scars along his jawline from the surgery to move his jaw forward....

    Attached Files:

  3. Jim Krause

    Jim Krause Active Member

    I can understand how you feel. It sure seems that things never come singley. It sounds like you're doing a great job with the baby, under extreme circumstances. My wife has sleep apnea among her other medical problems. I know how important the CPAP can be to getting a decent night's sleep and for one's life expectency as well. I would suggest that you somehow try to get a couple of hours to yourself once in awhile for some model railroading orjust plain R&R. I'm speaking from experience since I'm the full time caregiver for my wife. If nothing else, have a temporary caregiver for the baby and go for a walk. Maybe look for a caregiver support group in your area.
  4. spitfire

    spitfire Active Member

    Hi Michael and thank you for the update. I had no idea you were going through such a trying time... but I had been wondering why we haven't seen you in so long. I hope everything works out for your son. I've known quite a few big strong men who had a tough start in life like your son, but you would never know it now.

  5. Ralph

    Ralph's for fun!

    Nice picture of the little fella! I wish him well and hope all of these medical interventions can start to fade away. Best wishes with the sleep mask. I've been hearing about a lot of people getting those over the last couple of years. They seem to make a world of difference!
  6. Herc Driver

    Herc Driver Active Member

    What a tough little guy! I feel for you and your family...I've been there too with my youngest. Scars on a baby are one of life's toughest things to see...but it sounds like you're getting the help he needs and he'll get stronger every day. I'll be praying for him.

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