Guest guest Posted November 21, 2004 Report Share Posted November 21, 2004 It is perfectly normal for you and your kids to get tired of the myriad of appointments and to desire a break. As long as you aren't endangering the lives of your kids, it is fine to take a much needed break. We always try to schedule as many appointments in as short of a time period as we can so we can return home and " get on with our lives " rather than linger forever at the clinics and hospitals or have to make trips over and over again. Sometimes it is too frequent and we have to look at the scheduled appointments and ask if they are absolutely necessary. For instance, I had scheduled pulmonology appointments for both girls because they were dealing with lots of breathing issues a couple of months ago, but then after trying some reflux meds I find it no longer necessary to see a pulmonologist for a while. I know there are many on this group that also take breaks from therapy for their families sake as well. It can all get to be too much at times and we need to rest. I plan to cut back on some of the scheduled therapies this week due to the girls' illnesses as I know they need a break and I know it is for their best. This group is an awesome place for you to develop friends and support. There are quite a few single mothers that will understand just where you are coming from, and as one person said, us married women also understand quite a bit as well even though we have a partner because often the men separate themselves from the care-giving aspects of raising special needs kids. My hubby is great and really helps out around the home, but feels uncomfortable giving meds, doing medical procedures, doing the bedtime rituals of setting up monitors and feedings, etc. He loves his girls, but really feels uncomfortable (and really is too busy with a full-time job " and then some " ) to do these things. This means we moms end up doing most of the things required to keep our kids healthy and it can be hard at times and we too need breaks even from that. Don't feel guilty for wanting and needing a break. We all do! I hope you will know that I am your friend and that many here in this group would like to be your friend as well. Keep posting and sharing, asking questions, and even venting when needed. We all have our bad days and need friends and I am so glad this group if here for us all. See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.org Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Surgery during a crash?? > > > > > > > > > > > > > My worry is that the doctor seems unwilling to start any sort of > > > treatment until the biopsy is done... weve basically been told > > > to 'wait and see' until then, so if we reschedule it, were then in a > > > wait mode before anything is done to help him... > > > hes still a little iffy today, but we meet with the anasthesiologist > > > this afternoon so i will talk with her about my concerns. > > > He actually did just finish a growth spurt (5 lbs in 4 weeks!) so > > > that could account for it as well! > > > > > > > > > > > > > > > > > > > > > > I had a feeling this was on its way. its still not official but > > > > > theres alot making me think B's on his way to another crash. > > > > > His pre op appointment (muscle biopsy is on tuesday) was last > > > > > Wedensday, and he had been doing SO well till then... gained 5 > > > lbs > > > > > in a month, sleeping only 13-14 hours a day, so active, and > > > > happy. > > > > > Then on Thursday his eating slowed down BIG TIME (were talking a > > > > > small bowl of cereal and a few macaroni noodles all day). Since > > > > > then his naps have slowly increased, his sleeping at night is > > > > > longer, hes now up to 16-17 hours of sleep a day. His tremors > > > are > > > > > back REALLY BAD, another thing that had been gone for a while. > > > > > except now he gets them when hes up and about instead of just > > > > first > > > > > thing in the morning. > > > > > Overall hes still in good shape, hes not falling yet, and no > > > fever > > > > > so far... > > > > > He had Chicken Pox 3 weeks ago and just finished them up a week > > > > and > > > > > a half ago.... > > > > > My worry is that by tuesday we could be in really bad shape... > > > > will > > > > > they still do the surgery? will there be more risks? should i > > > be > > > > > worried about this??? > > > > > If we try to schedule surgery for a time hes either not sick, or > > > > not > > > > > having a crash, i will never happen... (especially since theres > > > > > generally a 3-6 week wait for appointments each time). > > > > > gah. > > > > > > > > > > Keely (Mom to , 21 months, suspected mito) > > > > > > > > > > > > > > > > > > > > > Please contact mito-owner with any problems or > > > questions. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2005 Report Share Posted November 15, 2005 Hi Barbara- I haven't been checking the groups lately. Got some catching up to do. Richmond called last week and changed my date from tomorrow untill Monday the 21st... Dissapointed?, yes, but I figure I've came this far, what are a few more days. Anxious?, yes, but I've been focusing on Guided Imagery and Reiki mp3's and Cd's to keep my head in the right spot. Fill me in as to how your saga is unfolding...We'll talk more. cheers H > > Hey are you out there? What is your last name, I'd like to come > visit you tomorrow!! Or does anyone else know?? > > Barbara (LTLJSMOM) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 Barbara Thanks for the update on . Donna"Hokoana, Barbara" wrote: Hey all, I just came from seeing and he is doing fantastic. He was first up this morning and was awake by 1130. He is tolerating food well although he has no real interest. He has been up and walking - 3 trips so far he told me and he is in great spirits. He will be released tomorrow! Barbara Donna JordonDSJordon@... Yahoo! FareChase - Search multiple travel sites in one click. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 21, 2005 Report Share Posted November 21, 2005 Barbara Thanks for the update on . Donna"Hokoana, Barbara" wrote: Hey all, I just came from seeing and he is doing fantastic. He was first up this morning and was awake by 1130. He is tolerating food well although he has no real interest. He has been up and walking - 3 trips so far he told me and he is in great spirits. He will be released tomorrow! Barbara Donna JordonDSJordon@... Yahoo! FareChase - Search multiple travel sites in one click. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2005 Report Share Posted November 22, 2005 That's great news, Barb! By the way, congratulations on your date!!! Robynn"Hokoana, Barbara" wrote: Hey all, I just came from seeing and he is doing fantastic. He was first up this morning and was awake by 1130. He is tolerating food well although he has no real interest. He has been up and walking - 3 trips so far he told me and he is in great spirits. He will be released tomorrow! Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2005 Report Share Posted November 22, 2005 That's great news, Barb! By the way, congratulations on your date!!! Robynn"Hokoana, Barbara" wrote: Hey all, I just came from seeing and he is doing fantastic. He was first up this morning and was awake by 1130. He is tolerating food well although he has no real interest. He has been up and walking - 3 trips so far he told me and he is in great spirits. He will be released tomorrow! Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2005 Report Share Posted November 22, 2005 > > Hey all, > > I just came from seeing and he is doing fantastic. He was first up > this morning and was awake by 1130. He is tolerating food well although > he has no real interest. He has been up and walking - 3 trips so far he > told me and he is in great spirits. He will be released tomorrow! > > Barbara > good to hear........thanks barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2005 Report Share Posted November 22, 2005 > > Hey all, > > I just came from seeing and he is doing fantastic. He was first up > this morning and was awake by 1130. He is tolerating food well although > he has no real interest. He has been up and walking - 3 trips so far he > told me and he is in great spirits. He will be released tomorrow! > > Barbara > good to hear........thanks barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2005 Report Share Posted November 22, 2005 Barbara, tell congrats and welcome to the other side! Pam Marsh --- " Hokoana, Barbara " wrote: > Hey all, > > I just came from seeing and he is doing > fantastic. He was first up > this morning and was awake by 1130. He is tolerating > food well although > he has no real interest. He has been up and walking > - 3 trips so far he > told me and he is in great spirits. He will be > released tomorrow! > > Barbara > __________________________________ Start your day with Yahoo! - Make it your home page! http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2005 Report Share Posted November 22, 2005 Barbara, tell congrats and welcome to the other side! Pam Marsh --- " Hokoana, Barbara " wrote: > Hey all, > > I just came from seeing and he is doing > fantastic. He was first up > this morning and was awake by 1130. He is tolerating > food well although > he has no real interest. He has been up and walking > - 3 trips so far he > told me and he is in great spirits. He will be > released tomorrow! > > Barbara > __________________________________ Start your day with Yahoo! - Make it your home page! http://www.yahoo.com/r/hs Quote Link to comment Share on other sites More sharing options...
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