Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Nichole We've had only a taste of the difficulties you mention re. breathing, suctioning etc, so for what its worth I send you a big hug and my wish that you were not enduring all this. It is scary to watch your child deteriorate before your eyes, and almost impossible to make the decisions that you face. We almost faced such a choice, but Hannah pulled through. She does not have the same severity of secretions as Caylob, at least not causing the difficuties that he has. We lay her on her side a lot so that the secretions can flow out of her mouth, because if we sit her up too much she gags and coughs etc when they run down her throat. Seeing her on oxygen doesnt scare me as much as it did at first, but suctioning bothers me and it scares her even more. As for the steroid treatments, they are downright frightening to watch. Are there any drugs to dry up the secretions? Can you position Caylob so that they drain from his mouth, as well as using suctioning? I really just want to give you the biggest hug Nichole, to hold you and tell you that I know how you feel, although our experience was nowhere near as serious as yours has been. You didnt depress me, rather you gave me a different perspective on how things are for us at the moment. But more than anything, you kindled the flame of understanding that comes from sharing the pain and grief that comes with caring for children such as ours and in the decision making processes we must endure. You certainly do need to say these things and to vent your fears, and the safest place is with those who've " been there " . Take care (Hannah's mum, Australia) PS - Hannah uses an upright stander at her school. The tray is quite high in front, up under her arms, so her head does not flop too far forward because her arms are help so high. Sometimes she throws her head back with such force that she cant lift it forward again, so the OT made a wide elastic fabric " bandage " to go behind her head and she attached each end of it to the frame. This way it stops her head going too far back, but is not actually around her head and restricting movement at all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Nichole We've had only a taste of the difficulties you mention re. breathing, suctioning etc, so for what its worth I send you a big hug and my wish that you were not enduring all this. It is scary to watch your child deteriorate before your eyes, and almost impossible to make the decisions that you face. We almost faced such a choice, but Hannah pulled through. She does not have the same severity of secretions as Caylob, at least not causing the difficuties that he has. We lay her on her side a lot so that the secretions can flow out of her mouth, because if we sit her up too much she gags and coughs etc when they run down her throat. Seeing her on oxygen doesnt scare me as much as it did at first, but suctioning bothers me and it scares her even more. As for the steroid treatments, they are downright frightening to watch. Are there any drugs to dry up the secretions? Can you position Caylob so that they drain from his mouth, as well as using suctioning? I really just want to give you the biggest hug Nichole, to hold you and tell you that I know how you feel, although our experience was nowhere near as serious as yours has been. You didnt depress me, rather you gave me a different perspective on how things are for us at the moment. But more than anything, you kindled the flame of understanding that comes from sharing the pain and grief that comes with caring for children such as ours and in the decision making processes we must endure. You certainly do need to say these things and to vent your fears, and the safest place is with those who've " been there " . Take care (Hannah's mum, Australia) PS - Hannah uses an upright stander at her school. The tray is quite high in front, up under her arms, so her head does not flop too far forward because her arms are help so high. Sometimes she throws her head back with such force that she cant lift it forward again, so the OT made a wide elastic fabric " bandage " to go behind her head and she attached each end of it to the frame. This way it stops her head going too far back, but is not actually around her head and restricting movement at all. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Nichole, I can't help but cry reading your email. I know how difficult it is to make that decision. We had to make the exact decision with our angel . My heart goes out to you and your family. It is so incredibly hard. I just want to give you a huge hug. I am so sorry , you have to go through this. I would give anything so that no would have to make such a decision. I agree with you , the quality of their life is important. Hugs and Kisses, Carolyn -- its me again HEY GROUP. FIRST OF ALL LET ME SAY HAPPY BIRTHDAY TO THE KIDS I HAVE MISSED AND GET WELL SOON TO OTHERS. I REREAD MY POST THE OTHER DAY AND I THINK THAT I WAS TOO MILD IN MY VENTING HAHAHA WE WOKE UP THAT NEXT MORNING, WHICH WAS FRIDAY AND HE WAS DOING REALLY BAD, EVEN ON O2, BREATHING TREATMENTS AND SUCTIONING. WHEN THE NURSE CAME IN SHE WAS REAL WORRIED BECAUSE IT SEEMED LIKE NOTHING WE DID WAS HELPING HIM. WELL AT 7:30 AM HE FINALLY GOT BAD ENOUGH FOR ME TO SAY LETS LOAD UP AND GO TO THE HOSP. HIS RESP WERE 48 AND HIS PULSE WAS 180, I MEAN HE WAS HAVING PROBS BREATHING EVEN WITH THE O2 ON. WHEN WE GOT TO THE HOSP. HE WAS ADMITTED RIGHT AWAY AND THEY DID 3 TREATMENTS BACK TO BACK AND THAT CLEARED HIM UP SOME. HE GOT STEROIDS AND ANTIBIOTICS THRU HIS IV FOR THE 5 DAYS THAT HE STAYED. ANYWAY BASICALLY THE DOC TOLD US THAT HE WASN'T GOING TO CLEAR UP AND THERE WAS NOTHING ELSE THAT THEY COULD DO FOR HIM. BUT THIS IS WHAT HE THINKS IS HAPPENING. CAYLOB IS ACCUMULATING MORE SECRETIONS THAN HE CAN HANDLE AND EVENTUALLY THEY ARE DRIPPING INTO HIS LUNGS, ENOUGH TO KEEP THE LUNGS IRRITATED BUT NOT ENOUGH TO CAUSE ASPIRATION PNEUMONIA. SO WE ARE HOME ON CONTINUOUS O2 AND SUCTIONING CONTINUOUSLY AND THE BREATHING TREATMENTS AND SHIT GUYS, WHAT IS NEXT. I GUESS THE REASON THAT I AM SO WORRIED IS THAT WE HAVE ALL SEEN THIS PATTERN HAPPEN IN OUR LITTLE FAMILY BEFORE (THE GROUP I MEAN) AND THE NEXT THING YOU KNOW IS THAT WE NOW HAVE AN ANGEL IN HEAVEN WITH THE REST OF THE KIDS. I CAN'T STOP THE TEARS FROM FALLING AND YES I SEE THIS AS THE BEGINNING OF THE END. THEY ARE TALKING ABOUT TRACHING HIM, BUT MY HUSBAND AND I BOTH KNOW HOW IMPORTANT HIS VOICE AND HIS LAUGHS AND HIS SOUNDS ARE TO ALL OF US FOR HIS OWN WAY OF COMMUNICATING. BUT WOULD THAT EXTEND HIS LIFE? WE BOTH AGREE THAT QUALITY IS MORE IMPORTANT THAN QUANTITY AND HAVE BOTH DECIDED THAT WE WILL NOT RESUSCITATE HIM IF WE KNOW THAT HE IS SUFFERING. SORRY TO DEPRESS EVERYONE BUT I HAD TO TALK TO PEOPLE THAT KNOW WHAT IS GOING ON. LOVE TO ALL NICHOLE PS FOR THE MOMS OF THE ANGELS THAT CAN NOT HOLD THEIR HEAD UP, DO ANY OF THEM HAVE A STANDER AND IF SO ,WHAT KIND? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Nichole, I can't help but cry reading your email. I know how difficult it is to make that decision. We had to make the exact decision with our angel . My heart goes out to you and your family. It is so incredibly hard. I just want to give you a huge hug. I am so sorry , you have to go through this. I would give anything so that no would have to make such a decision. I agree with you , the quality of their life is important. Hugs and Kisses, Carolyn -- its me again HEY GROUP. FIRST OF ALL LET ME SAY HAPPY BIRTHDAY TO THE KIDS I HAVE MISSED AND GET WELL SOON TO OTHERS. I REREAD MY POST THE OTHER DAY AND I THINK THAT I WAS TOO MILD IN MY VENTING HAHAHA WE WOKE UP THAT NEXT MORNING, WHICH WAS FRIDAY AND HE WAS DOING REALLY BAD, EVEN ON O2, BREATHING TREATMENTS AND SUCTIONING. WHEN THE NURSE CAME IN SHE WAS REAL WORRIED BECAUSE IT SEEMED LIKE NOTHING WE DID WAS HELPING HIM. WELL AT 7:30 AM HE FINALLY GOT BAD ENOUGH FOR ME TO SAY LETS LOAD UP AND GO TO THE HOSP. HIS RESP WERE 48 AND HIS PULSE WAS 180, I MEAN HE WAS HAVING PROBS BREATHING EVEN WITH THE O2 ON. WHEN WE GOT TO THE HOSP. HE WAS ADMITTED RIGHT AWAY AND THEY DID 3 TREATMENTS BACK TO BACK AND THAT CLEARED HIM UP SOME. HE GOT STEROIDS AND ANTIBIOTICS THRU HIS IV FOR THE 5 DAYS THAT HE STAYED. ANYWAY BASICALLY THE DOC TOLD US THAT HE WASN'T GOING TO CLEAR UP AND THERE WAS NOTHING ELSE THAT THEY COULD DO FOR HIM. BUT THIS IS WHAT HE THINKS IS HAPPENING. CAYLOB IS ACCUMULATING MORE SECRETIONS THAN HE CAN HANDLE AND EVENTUALLY THEY ARE DRIPPING INTO HIS LUNGS, ENOUGH TO KEEP THE LUNGS IRRITATED BUT NOT ENOUGH TO CAUSE ASPIRATION PNEUMONIA. SO WE ARE HOME ON CONTINUOUS O2 AND SUCTIONING CONTINUOUSLY AND THE BREATHING TREATMENTS AND SHIT GUYS, WHAT IS NEXT. I GUESS THE REASON THAT I AM SO WORRIED IS THAT WE HAVE ALL SEEN THIS PATTERN HAPPEN IN OUR LITTLE FAMILY BEFORE (THE GROUP I MEAN) AND THE NEXT THING YOU KNOW IS THAT WE NOW HAVE AN ANGEL IN HEAVEN WITH THE REST OF THE KIDS. I CAN'T STOP THE TEARS FROM FALLING AND YES I SEE THIS AS THE BEGINNING OF THE END. THEY ARE TALKING ABOUT TRACHING HIM, BUT MY HUSBAND AND I BOTH KNOW HOW IMPORTANT HIS VOICE AND HIS LAUGHS AND HIS SOUNDS ARE TO ALL OF US FOR HIS OWN WAY OF COMMUNICATING. BUT WOULD THAT EXTEND HIS LIFE? WE BOTH AGREE THAT QUALITY IS MORE IMPORTANT THAN QUANTITY AND HAVE BOTH DECIDED THAT WE WILL NOT RESUSCITATE HIM IF WE KNOW THAT HE IS SUFFERING. SORRY TO DEPRESS EVERYONE BUT I HAD TO TALK TO PEOPLE THAT KNOW WHAT IS GOING ON. LOVE TO ALL NICHOLE PS FOR THE MOMS OF THE ANGELS THAT CAN NOT HOLD THEIR HEAD UP, DO ANY OF THEM HAVE A STANDER AND IF SO ,WHAT KIND? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Nichole, I am so sorry to hear about Caylob, he is a beautiful baby. But always remember the joys he has given you for nothing can take those memories and feelings away. They are always a blessing even if we just have them for a short time. I will be praying that things will work themselves out. Many thoughts and prayers with you and your little angel melody --- Doug and Carolyn Petti wrote: > Nichole, > > I can't help but cry reading your email. I know how > difficult it is to > make that decision. We had to make the exact > decision with our angel > . My heart goes out to you and your family. > It is so incredibly > hard. I just want to give you a huge hug. I am so > sorry , you have to go > through this. I would give anything so that no > would have to make such a > decision. I agree with you , the quality of their > life is important. Hugs > and Kisses, > > Carolyn > > > -- its me again > > HEY GROUP. FIRST OF ALL LET ME SAY HAPPY BIRTHDAY > TO THE KIDS I HAVE MISSED > AND GET WELL SOON TO OTHERS. > > I REREAD MY POST THE OTHER DAY AND I THINK THAT I > WAS TOO MILD IN MY VENTING > HAHAHA > > WE WOKE UP THAT NEXT MORNING, WHICH WAS FRIDAY AND > HE WAS DOING REALLY BAD, > EVEN ON O2, BREATHING TREATMENTS AND SUCTIONING. > WHEN THE NURSE CAME IN SHE > WAS REAL WORRIED BECAUSE IT SEEMED LIKE NOTHING WE > DID WAS HELPING HIM. > WELL AT 7:30 AM HE FINALLY GOT BAD ENOUGH FOR ME TO > SAY LETS LOAD UP AND GO > TO THE HOSP. HIS RESP WERE 48 AND HIS PULSE WAS > 180, I MEAN HE WAS HAVING > PROBS BREATHING EVEN WITH THE O2 ON. > > WHEN WE GOT TO THE HOSP. HE WAS ADMITTED RIGHT AWAY > AND THEY DID 3 > TREATMENTS BACK TO BACK AND THAT CLEARED HIM UP > SOME. HE GOT STEROIDS AND > ANTIBIOTICS THRU HIS IV FOR THE 5 DAYS THAT HE > STAYED. ANYWAY BASICALLY THE > DOC TOLD US THAT HE WASN'T GOING TO CLEAR UP AND > THERE WAS NOTHING ELSE THAT > THEY COULD DO FOR HIM. BUT THIS IS WHAT HE THINKS > IS HAPPENING. CAYLOB IS > ACCUMULATING MORE SECRETIONS THAN HE CAN HANDLE AND > EVENTUALLY THEY ARE > DRIPPING INTO HIS LUNGS, ENOUGH TO KEEP THE LUNGS > IRRITATED BUT NOT ENOUGH > TO CAUSE ASPIRATION PNEUMONIA. > > SO WE ARE HOME ON CONTINUOUS O2 AND SUCTIONING > CONTINUOUSLY AND THE > BREATHING TREATMENTS AND SHIT GUYS, WHAT IS NEXT. I > GUESS THE REASON THAT I > AM SO WORRIED IS THAT WE HAVE ALL SEEN THIS PATTERN > HAPPEN IN OUR LITTLE > FAMILY BEFORE (THE GROUP I MEAN) AND THE NEXT THING > YOU KNOW IS THAT WE NOW > HAVE AN ANGEL IN HEAVEN WITH THE REST OF THE KIDS. > I CAN'T STOP THE TEARS > FROM FALLING AND YES I SEE THIS AS THE BEGINNING OF > THE END. THEY ARE > TALKING ABOUT TRACHING HIM, BUT MY HUSBAND AND I > BOTH KNOW HOW IMPORTANT HIS > VOICE AND HIS LAUGHS AND HIS SOUNDS ARE TO ALL OF US > FOR HIS OWN WAY OF > COMMUNICATING. BUT WOULD THAT EXTEND HIS LIFE? > > WE BOTH AGREE THAT QUALITY IS MORE IMPORTANT THAN > QUANTITY AND HAVE BOTH > DECIDED THAT WE WILL NOT RESUSCITATE HIM IF WE KNOW > THAT HE IS SUFFERING. > > SORRY TO DEPRESS EVERYONE BUT I HAD TO TALK TO > PEOPLE THAT KNOW WHAT IS > GOING ON. > > LOVE TO ALL > > NICHOLE > > PS FOR THE MOMS OF THE ANGELS THAT CAN NOT HOLD > THEIR HEAD UP, DO ANY OF > THEM HAVE A STANDER AND IF SO ,WHAT KIND? > > > > > [Non-text portions of this message have been > removed] > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Nichole, I am so sorry to hear about Caylob, he is a beautiful baby. But always remember the joys he has given you for nothing can take those memories and feelings away. They are always a blessing even if we just have them for a short time. I will be praying that things will work themselves out. Many thoughts and prayers with you and your little angel melody --- Doug and Carolyn Petti wrote: > Nichole, > > I can't help but cry reading your email. I know how > difficult it is to > make that decision. We had to make the exact > decision with our angel > . My heart goes out to you and your family. > It is so incredibly > hard. I just want to give you a huge hug. I am so > sorry , you have to go > through this. I would give anything so that no > would have to make such a > decision. I agree with you , the quality of their > life is important. Hugs > and Kisses, > > Carolyn > > > -- its me again > > HEY GROUP. FIRST OF ALL LET ME SAY HAPPY BIRTHDAY > TO THE KIDS I HAVE MISSED > AND GET WELL SOON TO OTHERS. > > I REREAD MY POST THE OTHER DAY AND I THINK THAT I > WAS TOO MILD IN MY VENTING > HAHAHA > > WE WOKE UP THAT NEXT MORNING, WHICH WAS FRIDAY AND > HE WAS DOING REALLY BAD, > EVEN ON O2, BREATHING TREATMENTS AND SUCTIONING. > WHEN THE NURSE CAME IN SHE > WAS REAL WORRIED BECAUSE IT SEEMED LIKE NOTHING WE > DID WAS HELPING HIM. > WELL AT 7:30 AM HE FINALLY GOT BAD ENOUGH FOR ME TO > SAY LETS LOAD UP AND GO > TO THE HOSP. HIS RESP WERE 48 AND HIS PULSE WAS > 180, I MEAN HE WAS HAVING > PROBS BREATHING EVEN WITH THE O2 ON. > > WHEN WE GOT TO THE HOSP. HE WAS ADMITTED RIGHT AWAY > AND THEY DID 3 > TREATMENTS BACK TO BACK AND THAT CLEARED HIM UP > SOME. HE GOT STEROIDS AND > ANTIBIOTICS THRU HIS IV FOR THE 5 DAYS THAT HE > STAYED. ANYWAY BASICALLY THE > DOC TOLD US THAT HE WASN'T GOING TO CLEAR UP AND > THERE WAS NOTHING ELSE THAT > THEY COULD DO FOR HIM. BUT THIS IS WHAT HE THINKS > IS HAPPENING. CAYLOB IS > ACCUMULATING MORE SECRETIONS THAN HE CAN HANDLE AND > EVENTUALLY THEY ARE > DRIPPING INTO HIS LUNGS, ENOUGH TO KEEP THE LUNGS > IRRITATED BUT NOT ENOUGH > TO CAUSE ASPIRATION PNEUMONIA. > > SO WE ARE HOME ON CONTINUOUS O2 AND SUCTIONING > CONTINUOUSLY AND THE > BREATHING TREATMENTS AND SHIT GUYS, WHAT IS NEXT. I > GUESS THE REASON THAT I > AM SO WORRIED IS THAT WE HAVE ALL SEEN THIS PATTERN > HAPPEN IN OUR LITTLE > FAMILY BEFORE (THE GROUP I MEAN) AND THE NEXT THING > YOU KNOW IS THAT WE NOW > HAVE AN ANGEL IN HEAVEN WITH THE REST OF THE KIDS. > I CAN'T STOP THE TEARS > FROM FALLING AND YES I SEE THIS AS THE BEGINNING OF > THE END. THEY ARE > TALKING ABOUT TRACHING HIM, BUT MY HUSBAND AND I > BOTH KNOW HOW IMPORTANT HIS > VOICE AND HIS LAUGHS AND HIS SOUNDS ARE TO ALL OF US > FOR HIS OWN WAY OF > COMMUNICATING. BUT WOULD THAT EXTEND HIS LIFE? > > WE BOTH AGREE THAT QUALITY IS MORE IMPORTANT THAN > QUANTITY AND HAVE BOTH > DECIDED THAT WE WILL NOT RESUSCITATE HIM IF WE KNOW > THAT HE IS SUFFERING. > > SORRY TO DEPRESS EVERYONE BUT I HAD TO TALK TO > PEOPLE THAT KNOW WHAT IS > GOING ON. > > LOVE TO ALL > > NICHOLE > > PS FOR THE MOMS OF THE ANGELS THAT CAN NOT HOLD > THEIR HEAD UP, DO ANY OF > THEM HAVE A STANDER AND IF SO ,WHAT KIND? > > > > > [Non-text portions of this message have been > removed] > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2002 Report Share Posted April 19, 2002 Nichole, I am so sorry to hear about Caylob, he is a beautiful baby. But always remember the joys he has given you for nothing can take those memories and feelings away. They are always a blessing even if we just have them for a short time. I will be praying that things will work themselves out. Many thoughts and prayers with you and your little angel melody --- Doug and Carolyn Petti wrote: > Nichole, > > I can't help but cry reading your email. I know how > difficult it is to > make that decision. We had to make the exact > decision with our angel > . My heart goes out to you and your family. > It is so incredibly > hard. I just want to give you a huge hug. I am so > sorry , you have to go > through this. I would give anything so that no > would have to make such a > decision. I agree with you , the quality of their > life is important. Hugs > and Kisses, > > Carolyn > > > -- its me again > > HEY GROUP. FIRST OF ALL LET ME SAY HAPPY BIRTHDAY > TO THE KIDS I HAVE MISSED > AND GET WELL SOON TO OTHERS. > > I REREAD MY POST THE OTHER DAY AND I THINK THAT I > WAS TOO MILD IN MY VENTING > HAHAHA > > WE WOKE UP THAT NEXT MORNING, WHICH WAS FRIDAY AND > HE WAS DOING REALLY BAD, > EVEN ON O2, BREATHING TREATMENTS AND SUCTIONING. > WHEN THE NURSE CAME IN SHE > WAS REAL WORRIED BECAUSE IT SEEMED LIKE NOTHING WE > DID WAS HELPING HIM. > WELL AT 7:30 AM HE FINALLY GOT BAD ENOUGH FOR ME TO > SAY LETS LOAD UP AND GO > TO THE HOSP. HIS RESP WERE 48 AND HIS PULSE WAS > 180, I MEAN HE WAS HAVING > PROBS BREATHING EVEN WITH THE O2 ON. > > WHEN WE GOT TO THE HOSP. HE WAS ADMITTED RIGHT AWAY > AND THEY DID 3 > TREATMENTS BACK TO BACK AND THAT CLEARED HIM UP > SOME. HE GOT STEROIDS AND > ANTIBIOTICS THRU HIS IV FOR THE 5 DAYS THAT HE > STAYED. ANYWAY BASICALLY THE > DOC TOLD US THAT HE WASN'T GOING TO CLEAR UP AND > THERE WAS NOTHING ELSE THAT > THEY COULD DO FOR HIM. BUT THIS IS WHAT HE THINKS > IS HAPPENING. CAYLOB IS > ACCUMULATING MORE SECRETIONS THAN HE CAN HANDLE AND > EVENTUALLY THEY ARE > DRIPPING INTO HIS LUNGS, ENOUGH TO KEEP THE LUNGS > IRRITATED BUT NOT ENOUGH > TO CAUSE ASPIRATION PNEUMONIA. > > SO WE ARE HOME ON CONTINUOUS O2 AND SUCTIONING > CONTINUOUSLY AND THE > BREATHING TREATMENTS AND SHIT GUYS, WHAT IS NEXT. I > GUESS THE REASON THAT I > AM SO WORRIED IS THAT WE HAVE ALL SEEN THIS PATTERN > HAPPEN IN OUR LITTLE > FAMILY BEFORE (THE GROUP I MEAN) AND THE NEXT THING > YOU KNOW IS THAT WE NOW > HAVE AN ANGEL IN HEAVEN WITH THE REST OF THE KIDS. > I CAN'T STOP THE TEARS > FROM FALLING AND YES I SEE THIS AS THE BEGINNING OF > THE END. THEY ARE > TALKING ABOUT TRACHING HIM, BUT MY HUSBAND AND I > BOTH KNOW HOW IMPORTANT HIS > VOICE AND HIS LAUGHS AND HIS SOUNDS ARE TO ALL OF US > FOR HIS OWN WAY OF > COMMUNICATING. BUT WOULD THAT EXTEND HIS LIFE? > > WE BOTH AGREE THAT QUALITY IS MORE IMPORTANT THAN > QUANTITY AND HAVE BOTH > DECIDED THAT WE WILL NOT RESUSCITATE HIM IF WE KNOW > THAT HE IS SUFFERING. > > SORRY TO DEPRESS EVERYONE BUT I HAD TO TALK TO > PEOPLE THAT KNOW WHAT IS > GOING ON. > > LOVE TO ALL > > NICHOLE > > PS FOR THE MOMS OF THE ANGELS THAT CAN NOT HOLD > THEIR HEAD UP, DO ANY OF > THEM HAVE A STANDER AND IF SO ,WHAT KIND? > > > > > [Non-text portions of this message have been > removed] > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 Do you mean he was actually using the suction equipment on himself? Wow. What a little soldier! (Melbourne) ----- Original Message ----- the last time he was in hospital he was suctioning himself and hes only two and a half hes just so use to it happening now Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2002 Report Share Posted April 28, 2002 Dear Nichole, Just catching up on emails now and had to reply. My heart really goes out to you and you husband to have to go thru such scary times and contemplate the unthinkable. I hope and pray Caylob pulls out of this. Big hug to all of you and a most gentle hug and kiss to your sweet Caylob. - About the Stander, Max has very poor head control but uses the giraffe prone stander. We didn't like the chin support it had - too little and didn't fit Max right - so we cut a large block from mattress foam and cover it with a small towel and fit it over the place the chin support goes. This works well for Max to rest his head and soaks up his drool as well. He really loves it and it's so nice to give him another position to be in. It also helps with his constipation as I swear the extra activity gets his bowels moving - he often has a bowel movement while in the stander. I just want to say one more thing - Max has quite a large head and very little head control (getting stronger little by little though) and I really didn't know how it was going to work. In the beginning Max would throw his head back and we'd have to stand behing him to make sure we caught his head and such. But he no longer does that and has learned to keep it from going too far back. We've had to make a few other home made adjustments to it as we go along but I'd highly recommend it. Take Care, Joanie mom to Max 22 mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2002 Report Share Posted April 28, 2002 Dear Nichole, Just catching up on emails now and had to reply. My heart really goes out to you and you husband to have to go thru such scary times and contemplate the unthinkable. I hope and pray Caylob pulls out of this. Big hug to all of you and a most gentle hug and kiss to your sweet Caylob. - About the Stander, Max has very poor head control but uses the giraffe prone stander. We didn't like the chin support it had - too little and didn't fit Max right - so we cut a large block from mattress foam and cover it with a small towel and fit it over the place the chin support goes. This works well for Max to rest his head and soaks up his drool as well. He really loves it and it's so nice to give him another position to be in. It also helps with his constipation as I swear the extra activity gets his bowels moving - he often has a bowel movement while in the stander. I just want to say one more thing - Max has quite a large head and very little head control (getting stronger little by little though) and I really didn't know how it was going to work. In the beginning Max would throw his head back and we'd have to stand behing him to make sure we caught his head and such. But he no longer does that and has learned to keep it from going too far back. We've had to make a few other home made adjustments to it as we go along but I'd highly recommend it. Take Care, Joanie mom to Max 22 mos Quote Link to comment Share on other sites More sharing options...
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