Posted by Karin on 1/20/2008, 6:42 am, in reply to "Re: PRS"
24.255.123.134
Linda -- where are you from? The tests you have described are ones I have not heard of before, and I'm very curious. We had a study done to see where food was going (called a "swallow study" ) but it was done in a feeding chair with a video x-ray machine and radioactive dye.
As to your earlier question about the trach and rolling over -- it is my experience that the more mobile my son has become, the easier it is to deal with the trach. It sounds backwards, but that was how it worked for us. As soon as Alex could scooch around the crib, he found ways to be sure that he didn't block his trach or that he moved his head if he did block his trach.
If there is a problem, there is a kind of trach called a "flex" that is longer and has a spring. It bends so that no matter how your child places his head, there is a good airway. We have one of the trachs, but we've never used it. My son was too interested in playing with his trach as it was, and we didn't want to provide him with anything longer and springier to play with.
--Previous Message--
: Linda,
: Thankyou for your response and is helpful to
: know that we are not alone. Please to know
: that you little one is doing so well.
: My daughter visited the medical team and Zoe
: is now having her pallate operation on the
: 9th of May. She will be barely 6 months.
: They have changed her formula to a very high
: calorie one in order for her to gain more
: weight rapidly. The will be doing some
: examinantion through her ears to check
: wether the food is going directly to the
: stomach rather going somewhere in the lungs.
: So far so good...she was told that the child
: development will automatically be slower
: that would be because of the trauma that she
: has gone through. We are concern of the
: trauma on her (brain)white matter and what
: is going to be the outcome of that. But I
: think positive as the brain is a very
: complicated organ and we normally use only
: ten percent of it. Doctors are very vague
: and they do not want to comit themselves
: with an answer. When you said that the
: doctors were not very optimistic about your
: baby's situation, what did they tell
: you..surely that was not supportive. I
: admire your courage and your positivity.
: Good for you and your baby. You will both
: make it and will look back at this..and the
: love and care will be profound.
: Andree
:
:
: --Previous Message--
: Congrats on your new granddaughter. I
: didn't
: have a trach to deal with as my son had a
: distraction early on so I can't really help
: you there. However, my son had very low
: muscle tone and was late holding his head
: and didn't roll until he was 10 mos. He was
: sitting independently at 11 mos. Weight
: bearing came at about 16 mos. He was born
: June 2005 and didn't start crawling until
: this past October and is now finally
: walking. This isn't meant to bring you
: down but hopefully uplift you in that if
: your granddaughter doesn't do things when
: others feel is apppropriate that try not to
: dwell on it (easier said than done). My son
: had 9 surgeries in the first year and half
: and at times it felt like he would never get
: off a g-tube, crawl, walk etc but now I am
: just thrilled and so very proud of what he
: has accomplished given what he had to deal
: with. Your granddaughter will amaze you
: with each little accomplishment she makes
: and you will learn not to take anything for
: granted. I remember doctors being "not
: so optimistic" on several occassions
: but one thing that kept me positive after
: licking my wounds was thinking, oh yea-wait
: till he shows you how wrong you were!!!)
:
: After much rambling... please keep in mind
: that things will improve, your granddauther
: (and your daughter) will get stronger and
: your granddaughter will be more loved by
: many people than you ever thaught possible
: as you will learn that EVERYONE loves to
: rally for those who really need it!
:
: One last note, you may be able to get an o2
: sat monitor that would alarm if the trach
: were to come out and oxygen levels were to
: drop.
:
: Take Care,
: Linda
:
: --Previous Message--
: Andree -- please post your message again as
: a
: new message. I'm afraid that folks won't
: see this response if they aren't following
: this thread, and I want you to get as many
: answers as possible. It sounds like your
: family has been through a lot. There will
: be ups and downs, but take a deep breath and
: relax. This is a hard thing your family is
: facing, but you will all get through it. We
: have all been where you are, and it does get
: easier. There will be days hwen you and
: your daughter will not believe that it gets
: easier, but it will. There is a range of
: experience among the folks on this website,
: and there will be people to help and
: encourage every step of the way.
:
: Congratulations on the little one!
:
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