Guest guest Posted January 11, 2000 Report Share Posted January 11, 2000 : What wonderful newsa about . You must be holding your breath to find out what his next advancement must be. I'm so happy for you and that this new treatment seems to be helping him so much. I really needed to hear some good news today! About the Thrombocytopenia, it means low platelets. I hope the inquiry into what happened to him at birth leads you to more answers. Thanks again for the great news on . --mom to -dysgammaglobulinemia; All--in remission MIA > > > Hi everyone, > Sorry I have not been around lately. I have been totally busy with > now that we are going to HBOT everyday. It is paying off though!! > has had soo many improvements with his CP that it has all of the therapist > and doctors on the edge of their seats to see what will happen next. We are > also hoping that it will help with the immune stuff, but that is something > that we will have to wait and see on until we can get some labs. If they > look good I think they will slowly decrease his IVIg every month to see if > the levels stay up. If they do then of course we will know that the HBOT > helped in this area as well *crossing my fingers and praying alot*. But > just to give you all an idea of the improvements that we have seen here > goes... > > Before treatment (before Dec.6, 1999), we were told that without shots and > possible surgery that would never cruise furniture (medically and > physically impossible due to him crossing his legs when they were straight). > Within 2 weeks of treatment, he was up and cruising around his play pen and > crib and on furniture, he is not the best at it yet, but is improving. He > has also started to actually crawl 85% of the time instead of scooting when > he is not trying to pull to a stand and cruise. He is alot more focused now > than before. His spasticity (high muscle tone) used to control him, now he > is controlling it for the most part. Also within 4 days of starting > treatments, he started to eat grits, then mashed banana and yams. And now > he is eating small bits of food (like those found in 3rd stage baby foods). > This is a major improvement as well because before he started, he could only > eat totally pureed foods because the texture of everything else made him > throw up. His speech has also turned for the better. He now says DADA to > his daddy and for Christmas I got to hear him call me MAMA (boy, talk about > making a mother cry!!). He is also saying uh uh to mean no, hi on occasion, > and yeah too. He also has totally learned what NO means and has mastered po > uting, LOL. According to his speech therapist, on 9/27/99 when she > evaluated him, he was at the 5-8 month level and was not making much > progress at all prior to HBOT (about the only improvement is that he would > let her put the nuk brush on his lips. When she evaluated him right before > Christmas, he had moved up to the 8-10 month level (all of the improvements > had occured during his 2 weeks in HBOT at that time). Oh, and yesterday he > let her put the nuk brush in his mouth 50, yes 50 times!! AND he tried to > walk just holding my fingers over to a table in the waiting room (did it > pretty well too). Once there, he was holding on with one hand and rotating > his trunk!! > > One of my 'local' friends has said that if keeps these improvements > up, that by the time he is evaluated again at the end of the month that the > doctors and therapist are going to need diapers to keep from having an > accident, LOL. > > Anyhow, I am just sooooooooooo excited about all of this and just wanted to > share with you all the new hope that we have found concerning 's > condition. > > I was sorry to read that some of the pumpkins have not been well as well as > some of the parents. Please know that I am at least reading the emails > daily, I just haven't had time to respond to any. I will continue to pray > for all of you each night as always!!! > > By the way, I do have a question, It has come to light that had > Thrombocytopenia at birth, and it being one of those 'penia' words I am > hoping that someone here might know what it is (what blood work would show > it) and is it congenital or what. The reason I ask is because we are in the > middle of an investigation of 's birth (doesn't look good either, for > them), and this is something they never told us about, along with the fact > that his brain was swollen at birth and that he had congenital pheumonitus > (pneumonia) which caused alot of the problems he had (to include maybe the > stroke he had soon after his birth (the cause of his CP)). Anyhow, any info > on this would be great. > > Bless all of you!! > > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2000 Report Share Posted January 11, 2000 Dear : That is the best news ever to be MIA, That is so....... wonderful about all of his improving, I say go go!!!!!!!!! Keep us posted on how much more he is doing and what a miracle, God Bless and keep on, annette and ALissa > >Reply-To: PedPIDonelist >To: " PedPID " <PedPIDonelist> >Subject: MIA >Date: Tue, 11 Jan 2000 08:56:29 -0500 > >Hi everyone, >Sorry I have not been around lately. I have been totally busy with >now that we are going to HBOT everyday. It is paying off though!! >has had soo many improvements with his CP that it has all of the therapist >and doctors on the edge of their seats to see what will happen next. We >are >also hoping that it will help with the immune stuff, but that is something >that we will have to wait and see on until we can get some labs. If they >look good I think they will slowly decrease his IVIg every month to see if >the levels stay up. If they do then of course we will know that the HBOT >helped in this area as well *crossing my fingers and praying alot*. But >just to give you all an idea of the improvements that we have seen here >goes... > >Before treatment (before Dec.6, 1999), we were told that without shots and >possible surgery that would never cruise furniture (medically and >physically impossible due to him crossing his legs when they were >straight). >Within 2 weeks of treatment, he was up and cruising around his play pen and >crib and on furniture, he is not the best at it yet, but is improving. He >has also started to actually crawl 85% of the time instead of scooting when >he is not trying to pull to a stand and cruise. He is alot more focused >now >than before. His spasticity (high muscle tone) used to control him, now he >is controlling it for the most part. Also within 4 days of starting >treatments, he started to eat grits, then mashed banana and yams. And now >he is eating small bits of food (like those found in 3rd stage baby foods). >This is a major improvement as well because before he started, he could >only >eat totally pureed foods because the texture of everything else made him >throw up. His speech has also turned for the better. He now says DADA to >his daddy and for Christmas I got to hear him call me MAMA (boy, talk about >making a mother cry!!). He is also saying uh uh to mean no, hi on >occasion, >and yeah too. He also has totally learned what NO means and has mastered >po >uting, LOL. According to his speech therapist, on 9/27/99 when she >evaluated him, he was at the 5-8 month level and was not making much >progress at all prior to HBOT (about the only improvement is that he would >let her put the nuk brush on his lips. When she evaluated him right before >Christmas, he had moved up to the 8-10 month level (all of the improvements >had occured during his 2 weeks in HBOT at that time). Oh, and yesterday he >let her put the nuk brush in his mouth 50, yes 50 times!! AND he tried to >walk just holding my fingers over to a table in the waiting room (did it >pretty well too). Once there, he was holding on with one hand and rotating >his trunk!! > >One of my 'local' friends has said that if keeps these improvements >up, that by the time he is evaluated again at the end of the month that the >doctors and therapist are going to need diapers to keep from having an >accident, LOL. > >Anyhow, I am just sooooooooooo excited about all of this and just wanted to >share with you all the new hope that we have found concerning 's >condition. > >I was sorry to read that some of the pumpkins have not been well as well as >some of the parents. Please know that I am at least reading the emails >daily, I just haven't had time to respond to any. I will continue to pray >for all of you each night as always!!! > >By the way, I do have a question, It has come to light that had >Thrombocytopenia at birth, and it being one of those 'penia' words I am >hoping that someone here might know what it is (what blood work would show >it) and is it congenital or what. The reason I ask is because we are in >the >middle of an investigation of 's birth (doesn't look good either, for >them), and this is something they never told us about, along with the fact >that his brain was swollen at birth and that he had congenital pheumonitus >(pneumonia) which caused alot of the problems he had (to include maybe the >stroke he had soon after his birth (the cause of his CP)). Anyhow, any >info >on this would be great. > >Bless all of you!! > > ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2000 Report Share Posted January 11, 2000 Good going....but may I ask...what's HBOT...I'm assuming that it's some sort of occupational threapy....??? So no news is good news from you..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 - Hooray, Hooray. HBOT has something to do with hyper baric oxygen right? I'm glad there are such wonderful and instant rewards with this therapy. Hopefully it will continue and even more extraordinary things are in store. Hugs and kisses to the progressing Pumpkin. Ursula - & Macey (4 yr old w/CVID) mom http://home.att.net/~maceyh/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 , That is such wonderful knews. I am thrilled for , you and your family. Helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 Hi Ursula and everyone else, Sorry for the delay on replying here. Yes, HBOT is hyperbaric oxygen treatments. has continued to improve. Last night for the first time, had exactly what we did for dinner, mashed sweet potatos (without milk and butter though because of allergies) and chicken (just in small bits mixed with the potatos). It was really exciting. Then tonight he ate mashed apples (the kind that come in a can for pies) and he also drank from a cup. The cup deal was really exciting because he has never even let me get one near his face let alone drink from one. He reminded me of the girls when they were like 10 months hold and would try to chew the lip of the cup. But then he held it forever just looking at it and all. BUT HE DRANK, I am sooooo excited!! RE: MIA > > > - Hooray, Hooray. HBOT has something to do with hyper baric oxygen >right? I'm glad there are such wonderful and instant rewards with this >therapy. Hopefully it will continue and even more extraordinary things are >in store. Hugs and kisses to the progressing Pumpkin. > >Ursula - & Macey (4 yr old w/CVID) mom >http://home.att.net/~maceyh/ > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 ...that's exciting news! Please explain what the oxygen treatmants are....I'm curious! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 13, 2000 Report Share Posted January 13, 2000 ; That is wonderful the HBOT really works, we have alot of children at st.joes here in phoenix that are using it and with great success. Hope DAvid keeps on doing well, God Bless, annette and alissa > >Reply-To: PedPIDonelist >To: <PedPIDonelist> >Subject: Re: MIA >Date: Thu, 13 Jan 2000 23:05:34 -0500 > >Hi Ursula and everyone else, >Sorry for the delay on replying here. Yes, HBOT is hyperbaric oxygen >treatments. has continued to improve. Last night for the first >time, > had exactly what we did for dinner, mashed sweet potatos (without >milk >and butter though because of allergies) and chicken (just in small bits >mixed with the potatos). It was really exciting. Then tonight he ate >mashed apples (the kind that come in a can for pies) and he also drank from >a cup. The cup deal was really exciting because he has never even let me >get one near his face let alone drink from one. He reminded me of the >girls >when they were like 10 months hold and would try to chew the lip of the >cup. >But then he held it forever just looking at it and all. BUT HE DRANK, I am >sooooo excited!! > > > RE: MIA > > > > > > > > - Hooray, Hooray. HBOT has something to do with hyper baric oxygen > >right? I'm glad there are such wonderful and instant rewards with this > >therapy. Hopefully it will continue and even more extraordinary things >are > >in store. Hugs and kisses to the progressing Pumpkin. > > > >Ursula - & Macey (4 yr old w/CVID) mom > >http://home.att.net/~maceyh/ > > > > > > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
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