We are back!!! We met Dr. H and she was wonderful and very hands on! She spent three hours with us and confirmed lots of things for us. No new big news, but lots of direction. We are taking the oil and polycose out of her bottles and she will have straight formula. We will not eat rice cereal, but Barley cereal - less carbs. She seems to have hip joint restriction and possible C - shaped scoliosis. We will need to see an orthopedist to totally confirm this! We also got a referral for an endocrinologist for us in Jacksonville.
Dr. H gave me some ideas about venting her tube, giving her some water in the am and pm in her tube to help with constipation. Venting her will leave more room in her belly for food instead of too much air. She thought Caroline was very alert and aware. She gave much hope for talking and walking at some point. We will go back to see her in about a year. We also discussed growth hormone treatment in the future and what we need to look for and think about.
She warned us to try not to treat her like an infant because her brain is like an 8 month old she wants to do 8 month old things and not 4 month old things. Assist her to a sitting position and accommodate her to be able to sit and play in he excersaucer.
We will have feeding therapy twice a month and we will increase PT to twice a week.
We are sick now with a cold and ear infection. We are fever free, but had a fever for three days. We went back to the Dr today for a check on our breathing because we have been very congested and breathing treatments twice a day again.
Cameron and I had one day and one night in the city. We went to eat and met up with my cousin Dawn. We spent three days in New Jersey visiting aunts, uncles, cousins and great grandparents. it was wonderful to see everybody!
Everyone was overjoyed to meet Caroline and gave her lots of love!!!!
Caroline is 12.6 today!!!
4 comments:
Congrats on such a fantastic appt! I hope all of the new suggestions help Caroline.
I'm not aware of the supplements you were putting in her bottle, but I know that we have to fortify Avery's milk to a higher calorie for weight gain. We use enfacare enfamil 22 cal premature formula fortified to 24 calories. You can fortify up to 30. She was put on 22 cal and then 24 cal in the NICU. She is near 12 pounds at 6 months. . . she grows slowly but not as slow as she would without the extra calories. Anyway, I just wanted to share our experience. Avery doesn't have a tube so I'm totally not in the loop on that. She just had an NG tube in the NICU and then a different tube during her PICU stay when she became ill.
Crawling, walking, etc are very much a possibility. Its likely our girls will do those things later than other children but I definately think they will get there. I'm excited your PT is going well. 2x a week will be awesome. I put Avery into an excersaucer today at a friend's house and although it was really big for her she did well with supports around her. She even seemed to enjoy the new experience. A bumbo seat has been a godsend to us lately. Its really helped her get up in space.
Anyway, email if you get a chance. It would be nice to chat about our babies. Congrats again on the great appt.
Ariana
Although I haven't sent a note in a while, I check the blog often. It sounds like the NY trip was a very positive experience! It's amazing how much of a difference it can make when you have the right team to work with.
We continue to pray for all of you as you work toward being together and adjust to the new joys and challenges of family.
Love you,
Jenn
What an awesome experience!! Congrats on coming off the oil and polycose! Once these babies approach 5, they tend to have weight issues in terms of obesity, if you can imagine that with all the problems we have getting their weight up in the early days...but, it's true. Truncal obesity for these kids once they hit 4 or 5 is not uncommon.
Scoliosis is also common, and it sounds like you have a good handle on that too. Kim, you're doing such a good job!
There is no reason I can see that Caroline won't be walking and talking. I believe David would be too, if he didn't have CP in addition to DTM. Shoot...the boy talks your ear off...and climbs into his wheelchair so he can 'go out there'. Trust me, if he weren't limited by CP...he'd be GONE!
And, yes...treat her according to her cognitive wishes. If she wants to stand, but physically can't, find a way to get her upright. If she wants to feed herself, but physically can't, find a way to help her do it. Put her hand on the spoon, and guide it to her mouth, letting go, and showing her she's doing it on her own...that kind of thing. Praise every attempt, or pseudo-attempt! Man...we Mosaic Moms sure do learn how to be Cheerleaders, ey?
To assist David to sit, we got him his own 'My Chair', and used foam blocks to hold him up. His teacher got him a 3-sided 'sitter' with a strap that held him up. We put a mirror in front of him, so that he could talk to himself and keep himself company, which I recommend for the bed, and the floor....wherever Carolyn is, put a mirror in front of her. When she's sitting, put blocks in front of her, between her and the mirror, and help her to stack them, for coordination. With the mirror, she'll get to watch herself succeed at picking things up and moving them around. And, get a beach ball, and balance her on it in different positions...it's kind of a take off from horse therapy. It's amazing how the tiniest little movement on a ball can draw so many muscle groups into action!
Anything you can do to get her upright...to assist in muscle coordination and strengthening...go for it! OH, man...I've got to get our photos scanned so y'all can see them! When David was tiny, I made a 'David sized' Johnny Jump up that got him upright. Use anything!
You'll have to send me a picture of the excersaucer. I've never heard of that...did you get that in a store, or did a PT give that to you? I see that Ariel has one too...that's awesome...I'd love to see one!
Isn't it great to be with family?? And aren't these kiddos charmers???? haha! They melt snow off the most formidable mountains! Do you know I used to have crotchety little old ladies following me around a store, just to get a peek at Dave?...he was sooo tiny, and sooo beautiful...they just couldn't resist! haha!
I'm sooo happy for you with all your good news! I can hardly wait to hear from you again!
Love to all!...and hugs all around! Julie xox
Mom filled me in on some of the details...got your message and will call soon! Glad the appointment went well!
Love,Kelly
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