ktgrok Posted April 23, 2016 Share Posted April 23, 2016 Fourcat mom, any updates? 1 Quote Link to comment Share on other sites More sharing options...
josie9499 Posted April 23, 2016 Share Posted April 23, 2016 Nrg: have you seen results from those with constant double vision? Sorry to thread jack.. Quote Link to comment Share on other sites More sharing options...
Mom25girls Posted April 23, 2016 Share Posted April 23, 2016 Continuing to pray for your daughter, you and her doctors. :grouphug: :grouphug: 2 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted April 23, 2016 Author Share Posted April 23, 2016 Fourcat mom, any updates? Thanks for asking. Didn't realize this thread had come up again. We have seen two Neurosurgeons at this point and both have confirmed Chiari 1 Malformation. Her herniation is small at only about 3.5 mm. We like one of the NS very much but he still thinks she is dealing with some post concussive issues, mainly her eye tracking and frontal headaches. So this has been an ongoing discussion as I don't think her symptoms are still related to the TBI. She was referred to a pain clinic and she has started some PT, acupressure and pain counseling but PT has been the most valuable in getting more info. She recently had a flexion and extension MRI, the NS said he felt that her images reflect whiplash but again we disagree on this as the TBI was 16 months ago and I have heard countless times that her symptoms don't fit PCS. So, we are going to send her images and reports to another NS and see if we can get more info. She is still unable to do school most days but she is getting out of the house more, or trying to anyways. Unfortunately we did have to re-home the horse. :sad: In the end where he went was up to her and she choose a rescue that she felt very comfortable with. She needed to get out of the barn that she/he was at. It wasn't a good situation and I think it was causing a lot of emotional issues. She has not been back to the barn in a month since he left but she is doing okay. Hopefully at some time she will find the right barn with the right people and be able to ride again. The horse is doing great, has a girlfriend, the day he arrived she actually pushed food into his stall from hers) and they are pretty inseparable. The rescue loves him and they think they might keep him. My dd has been out there to see him, was able to take him out and brush him and she can call or email anytime she wants an update. Even though I was terrified to proceed with this, it really has been a good thing. My dd is also really starting to discover other things that she likes, like dance and photography so I am really hoping that she grows (she already has) threw this process. But, medically she is still very much fighting. The NS said she was significantly compromised and would not do surgery right now anyways but he wants to get her stronger and see if he can reduce any symptoms that might be coming from the PCS. She will have to be followed for life. She goes to see a geneticist in June to be evaluated for Ehlers-Danlos Syndrome and a Spine Doctor (her full spine MRI showed multiple bulging disc in both her cervical and lumbar areas as well as inflammation). in June as well. I think I have learned that there is no quick fix to this and the day to day is still just as tough, almost harder because I expected some relief by now and it only seems to be getting worse. :confused1: 6 Quote Link to comment Share on other sites More sharing options...
Alessandra Posted April 23, 2016 Share Posted April 23, 2016 (edited) I just saw this thread. I am amazed at your persistence and fortitude. What a difficult journey. I wanted to ask if there any therapeutic riding laces near you. Dd did therapeutic riding when she was younger. Three adults assist, one in front, one on each side -- no danger of falling off. Obviously, it wouldn't be the kind of riding your dd did, but it does allow you to be around horses. My dd benefitted so much, both physically and emotionally. I agree that there is something about horseback riding that no other sport has. ETA I thought you might like this website, whatever you decide. http://ponypowernj.org I know you are at the other side of country, but the stories here are so moving. Edited April 23, 2016 by Alessandra Quote Link to comment Share on other sites More sharing options...
kbutton Posted April 24, 2016 Share Posted April 24, 2016 I'm new to this forum and found it in my desperate search for anything related to kids with double vision. How are things going? I'm sorry you have gone through all this but to have a clear diagnosis must be some relief at least. My dd is 7 and we've learned she sees double, always. At first she said seen this for years but just close up but now she sees it all the time and her reading ability has gone way down in just weeks, it has scared me to my core. We've gone down the path you are familiar with, pedi opthamologist who was perplexed but says CI. But I'm not sure, it's double always (near and far) in both eyes and single with 1 eye but then very blurry (far sighted using just 1 eye). He told us to do pencil push ups and come back in 8 weeks. We do the exercises but went straight to a neurologist who said initial exam looks good but now we have an MRI next week. Scared, but this is what we must do, so many questions and so few answers and seems like no one sees this which makes it worse. I'm glad to find a few people here that maybe experienced it to a degree. josie9499, There is a wealth of information on the forums (particularly the learning challenges board) about convergence insufficiency and vision therapy. There are a few vocal opponents of VT in some older threads, but many, many of us have been through vision therapy with our kids with very good results. Depending on the MRI results, you might check out developmental optometrists in your area from the COVD website (www.covd.org). I recommend finding one that works on at least some retained primitive reflexes. Not all ophthalmologists or neurologists are into VT, so you might not get positive information if you ask yours. (Just a heads up on that.) If it does turn out to be CI, vision therapy could be life-changing. Fourcatmom--it's good to hear your update, but I am sorry things are not moving forward faster. Thanks for letting us all know what's up. Quote Link to comment Share on other sites More sharing options...
OnMyOwn Posted April 24, 2016 Share Posted April 24, 2016 (edited) Thanks for asking. Didn't realize this thread had come up again. We have seen two Neurosurgeons at this point and both have confirmed Chiari 1 Malformation. Her herniation is small at only about 3.5 mm. We like one of the NS very much but he still thinks she is dealing with some post concussive issues, mainly her eye tracking and frontal headaches. So this has been an ongoing discussion as I don't think her symptoms are still related to the TBI. She was referred to a pain clinic and she has started some PT, acupressure and pain counseling but PT has been the most valuable in getting more info. She recently had a flexion and extension MRI, the NS said he felt that her images reflect whiplash but again we disagree on this as the TBI was 16 months ago and I have heard countless times that her symptoms don't fit PCS. So, we are going to send her images and reports to another NS and see if we can get more info. She is still unable to do school most days but she is getting out of the house more, or trying to anyways. Unfortunately we did have to re-home the horse. :sad: In the end where he went was up to her and she choose a rescue that she felt very comfortable with. She needed to get out of the barn that she/he was at. It wasn't a good situation and I think it was causing a lot of emotional issues. She has not been back to the barn in a month since he left but she is doing okay. Hopefully at some time she will find the right barn with the right people and be able to ride again. The horse is doing great, has a girlfriend, the day he arrived she actually pushed food into his stall from hers) and they are pretty inseparable. The rescue loves him and they think they might keep him. My dd has been out there to see him, was able to take him out and brush him and she can call or email anytime she wants an update. Even though I was terrified to proceed with this, it really has been a good thing. My dd is also really starting to discover other things that she likes, like dance and photography so I am really hoping that she grows (she already has) threw this process. But, medically she is still very much fighting. The NS said she was significantly compromised and would not do surgery right now anyways but he wants to get her stronger and see if he can reduce any symptoms that might be coming from the PCS. She will have to be followed for life. She goes to see a geneticist in June to be evaluated for Ehlers-Danlos Syndrome and a Spine Doctor (her full spine MRI showed multiple bulging disc in both her cervical and lumbar areas as well as inflammation). in June as well. I think I have learned that there is no quick fix to this and the day to day is still just as tough, almost harder because I expected some relief by now and it only seems to be getting worse. :confused1: Thanks for the update. The slow progress must be extremely frustrating, but it sounds like you are on the right track. It's wonderful that your dd is developing new interests and that moving the horse has been a positive. What a tough decision that must have been! Your dd is lucky to have a mom who cares so much and who is so persistent. Edited April 24, 2016 by OnMyOwn Quote Link to comment Share on other sites More sharing options...
Stacia Posted April 24, 2016 Share Posted April 24, 2016 :grouphug: :grouphug: :grouphug: for you & your dd as you continue to look for answers & more info. Quote Link to comment Share on other sites More sharing options...
happi duck Posted April 24, 2016 Share Posted April 24, 2016 (Hugs) Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted July 20, 2016 Author Share Posted July 20, 2016 (edited) Just thought I would post another update as things are progressing towards surgery now. We did end up seeing a 3rd neurosurgeon and he said the ligaments in her neck were inflammed and put her in hard neck collar. She hated the collar and refused to leave the house but more importantly she said it made everything worse. I didn't have a great feeling about this NS and it was confirmed when I called to ask about the collar hurting he basically just said, "I don't know, we just wanted to offer you something" So, we ended going back to the first NS that we both liked, wrote him a very personal letter and we got back on track with things. She had a CINE MRI in June which shows CSF flow and we found out that she is almost completely blocked in the back of the brain. But, that MRI also showed that her herniation was actually worse then on the MRI's in April and that really got the NS's attention. However, at that particular appointment she looked great! Better then she had in weeks so he asked her to do some soul searching about what she wanted, what she was able to do and to really think about surgery. She spent most of June really thinking and we started pushing more, asking for more school and more responsibility to see if she could do it. It didn't take long for her to feel overwhelmed and realize that she could do some but wasn't able to get back to a normal level of activity. So in July we saw NS again and she was able to ask him all her questions about surgery and told him she was ready to move forward. He did want to have a CT Myelogram done first which is a CT and a spinal tap where they can check her CSF pressure and check for a CSF leak. We have been waiting this whole month to see if that can get scheduled. There are only a few doctors he will let perform it on her and the one he wants doesn't see pediatrics. Oh, it's never easy...they really need to do this before surgery because, one it could help and two because it can pull the brain down farther making the herniation worse. So, we are sitting and waiting. She has had a tough month, stopped going to activities in late June and has really been bed bound for most of this month. Dizziness is getting worse to the point where even bathing is hard and she is still seeing orange spots in her vision and the ringing in her ears is also worse. I am pushing for surgery the first week of August whether the CT is done or not. She can't keep laying here. The NS said he would probably just schedule an urgent surgery but he was waiting to see if he could get the CT to happen first. Please keep her in your thoughts as we move closer to this reality. I have peace about this although I am very scared. We both have complete faith in the NS and there is not a shadow of a doubt that we are in the right place (seeing multiple NS's helped me figure that out). He is so compassionate and told me he would not do surgery unless he was going to be in town for a period of time to see her though this. He said she was not a patient where he could do surgery and leave town the next day. He wouldn't do that to her. I know at this point it's going to happen it's just a matter of time. On a positive note, she does not have Ehlers-Danlos. Finally some good news. :o And she is getting some time to process things and talk about it and she has now told most of her friends and she is talking about surgery openly and that needed to happen. We need her strong enough to fight, she needed to be on board with this decision and she finally is. But, it took quite awhile to get there. ​ Edited July 20, 2016 by fourcatmom 15 Quote Link to comment Share on other sites More sharing options...
TechWife Posted July 20, 2016 Share Posted July 20, 2016 :grouphug: Keep up the good work, Mom. You are all in my thoughts and prayers. 1 Quote Link to comment Share on other sites More sharing options...
happi duck Posted July 20, 2016 Share Posted July 20, 2016 (hugs) 1 Quote Link to comment Share on other sites More sharing options...
mamiof5 Posted July 20, 2016 Share Posted July 20, 2016 I had totally missed this update (since February). Many prayers for all of you!!! 1 Quote Link to comment Share on other sites More sharing options...
Stacia Posted July 20, 2016 Share Posted July 20, 2016 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
mominco Posted July 20, 2016 Share Posted July 20, 2016 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
DaisyDay Posted July 21, 2016 Share Posted July 21, 2016 fourcatmom, I just saw this thread and wanted to offer my support. My son (now 18) was diagnosed with Chiari I at the age of 14 after suffering debilitating headaches and seizures, and he did have the surgery your daughter is facing. I wanted to tell you that the fear of the unknown is the worst part. It is scary to hear the doctor describe the procedure but, in reality, we were pleasantly surprised at how smoothly it went and how much BETTER he felt immediately following the surgery. He woke up hungry in the recovery room after not being able to eat for days prior, due to the headaches and vomiting. He was chowing down on a chili dog within a couple of hours and watching a movie in bed. He went home about 2 days later with nothing but ibuprofen for pain. The scar is not a big deal and his hair grew back quickly. He is also an avid horseback rider and he owns his own horse and still rides, but always with a helmet. Please do not let this medical issue control or define your daughter. Hugs and best wishes to both of you! Keep us updated! 8 Quote Link to comment Share on other sites More sharing options...
sassenach Posted July 21, 2016 Share Posted July 21, 2016 Thank you for the update. You are a warrior mama. Praying for your girl. Quote Link to comment Share on other sites More sharing options...
TravelingChris Posted July 21, 2016 Share Posted July 21, 2016 Praying for your daughter for a succesful surgery. Quote Link to comment Share on other sites More sharing options...
displace Posted July 22, 2016 Share Posted July 22, 2016 Praying for your daughter! Quote Link to comment Share on other sites More sharing options...
Lilaclady Posted July 22, 2016 Share Posted July 22, 2016 Praying for your daughter and you all. Quote Link to comment Share on other sites More sharing options...
TianXiaXueXiao Posted July 23, 2016 Share Posted July 23, 2016 Praying for your dear daughter and for your mama's heart. Peace be with you. Quote Link to comment Share on other sites More sharing options...
dirty ethel rackham Posted July 23, 2016 Share Posted July 23, 2016 :grouphug: Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted July 26, 2016 Author Share Posted July 26, 2016 fourcatmom, I just saw this thread and wanted to offer my support. My son (now 18) was diagnosed with Chiari I at the age of 14 after suffering debilitating headaches and seizures, and he did have the surgery your daughter is facing. I wanted to tell you that the fear of the unknown is the worst part. It is scary to hear the doctor describe the procedure but, in reality, we were pleasantly surprised at how smoothly it went and how much BETTER he felt immediately following the surgery. He woke up hungry in the recovery room after not being able to eat for days prior, due to the headaches and vomiting. He was chowing down on a chili dog within a couple of hours and watching a movie in bed. He went home about 2 days later with nothing but ibuprofen for pain. The scar is not a big deal and his hair grew back quickly. He is also an avid horseback rider and he owns his own horse and still rides, but always with a helmet. Please do not let this medical issue control or define your daughter. Hugs and best wishes to both of you! Keep us updated! Thank you for sharing this. The waiting is definitely getting to me but I also feel that everything we have done has been necessary and I can move forward with peace of mind that we are making good decisions. I am so hopeful that the surgery will help. We are getting closer on the other test, the CT Myelogram but still haven't got a date set yet. My gut is telling me things will happen next week so we will see how right I am. It is nice to know that he continues to ride as well. I am not anywhere close to that acceptance yet but if that is where her heart is then I will not stop her. I don't think I will ever breathe normally again though while she is on a horse but time does heal all wounds they say so maybe it will work out. I would still prefer a dog though at this point. Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted August 27, 2016 Author Share Posted August 27, 2016 (edited) So my dd went in last Friday for her first procedure. She ended up having a CT Myelogram and 2 blood patches and spent the night in the hospital. She was on 12 hours bed rest after so not even getting out of bed to use the restroom, that was a new experience for her! Anyways, the CT was through a lumbar puncture and then they did find one area in her thoracic spine that was questionable for a CSF leak but it wasn't obvious. It was either a bulging disk or a cyst poking at her dura. The area was on the inside so it was a bit tricky to do the blood patch because they had to use a catheter to go around to the front side of her spine. Even though it wasn't an obvious leak they decided to patch it since they were in there and she was already sedated. ​Even though it didn't show an obvious leak they were still able to check her opening cerebrospinal fluid pressure, send some CSF to the lab and rule out a few things. However, it was quite a painful procedure for her and now she is not sure she wants to move forward with surgery which is the likely next step. On a positive note we were able to have one of the top three doctors really leading the field in CSF leaks available and in the room leading the procedure. We weren't quite sure it was going to happen because up until last month he couldn't even treat pediatrics. But, her neurosurgeon wanted him in there and he was! The whole procedure was 3 1/2 hours long and her NS was not performing the test (not his field) so having this expert on CSF leaks in the procedure and leading it was a huge blessing for me! Our next appointment in on the 6th, hoping surgery gets scheduled!!! Her journey is far from over, please keep her in your thoughts and prayers! :grouphug:​ Edited August 27, 2016 by fourcatmom 10 Quote Link to comment Share on other sites More sharing options...
happi duck Posted August 27, 2016 Share Posted August 27, 2016 (hugs) 1 Quote Link to comment Share on other sites More sharing options...
mominco Posted August 27, 2016 Share Posted August 27, 2016 :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
displace Posted August 27, 2016 Share Posted August 27, 2016 Praying for good news! 1 Quote Link to comment Share on other sites More sharing options...
MooCow Posted August 28, 2016 Share Posted August 28, 2016 Continuing to pray!! 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted August 28, 2016 Share Posted August 28, 2016 What a blessing to have him there! 1 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted October 4, 2016 Author Share Posted October 4, 2016 Just wanted to update that my DD will be having brain surgery on October 26th. Please keep her in your thougths and prayers. She is extremely scared and nervous. It has been a very long road to end up at this point....but we are reamining hopeful that things will improve. As much as we are scared there is no way we can't proceed. She is almost completely bed bound at this point with all her symptoms. We finally got her to bathe this weekend and the process of bathing, washing her hair and combing through it took about 5 hours because of all the breaks she needed. She is just so physically compromised at this point and the dizziness with visual changes is getting worse. :grouphug: Thank you all for allowing me to vent and get support through out this whole process...it's been most helpful to have a place where I can share my fears and frustrations. 10 Quote Link to comment Share on other sites More sharing options...
OneStepAtATime Posted October 4, 2016 Share Posted October 4, 2016 Just wanted to update that my DD will be having brain surgery on October 26th. Please keep her in your thougths and prayers. She is extremely scared and nervous. It has been a very long road to end up at this point....but we are reamining hopeful that things will improve. As much as we are scared there is no way we can't proceed. She is almost completely bed bound at this point with all her symptoms. We finally got her to bathe this weekend and the process of bathing, washing her hair and combing through it took about 5 hours because of all the breaks she needed. She is just so physically compromised at this point and the dizziness with visual changes is getting worse. :grouphug: Thank you all for allowing me to vent and get support through out this whole process...it's been most helpful to have a place where I can share my fears and frustrations. Huge, huge hugs. I hope with all my heart that this will bring improvement and the surgery will be smooth and successful. I know this has been a long, hard, uncertain journey. Sending as much supportive energy your way as I can possibly muster. Best wishes. 1 Quote Link to comment Share on other sites More sharing options...
Jean in Newcastle Posted October 4, 2016 Share Posted October 4, 2016 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted October 4, 2016 Author Share Posted October 4, 2016 Thank you. They will actually be doing three things during the surgery, taking a small piece of her skull out of the back, opening her dura and cleaning up any scar tissue in the back of the brain as well as placing a synthetic patch in to close the dura up and then shaving down her C1. Hopefully this will provide more space and return her CSF flow back to normal. They anticipate a 5-7 day hospital stay as she is so compromised but the surgeon is very particular about how he is proceeding, we have had to wait because he's been out of town and he wont do surgery unless he's in town for a few weeks after. He also is having the pain management team invovled and child life team readily available so hopefully she will be okay. 7 Quote Link to comment Share on other sites More sharing options...
StephanieZ Posted October 4, 2016 Share Posted October 4, 2016 FWIW, I'd encourage you to consider keeping the horse(s) even if your dd can't ride. I rode horses when I was a teenager. I spent 3-5 hours each day with my horse (in a full board situation in which I had no real care taking duties). I rode an hour or so, and spent the rest of the time brushing, bathing, cuddling, re-cleaning her already-clean stall, and all other forms of care taking for my horse. I GUARANTEE that the care taking part of the horse thing was 90% of the good I got out of horse ownership. I know horses are really expensive and tons of work. BUT, if you can at all swing it, I'd encourage you not to rush the letting go of the horse. Just embrace "what is" and let go of "what isn't" . . . Taking care of a loved horse, especially one you "own", is a really nurturing, beautiful thing. Especially for a girl who has lost a lot and is suffering. (((hugs))) 2 Quote Link to comment Share on other sites More sharing options...
Miss Mousie Posted October 4, 2016 Share Posted October 4, 2016 Huge, huge hugs. I hope with all my heart that this will bring improvement and the surgery will be smooth and successful. I know this has been a long, hard, uncertain journey. Sending as much supportive energy your way as I can possibly muster. Best wishes. I can't say it any better than this. Many hugs, and many, many good wishes. 2 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted October 4, 2016 Author Share Posted October 4, 2016 FWIW, I'd encourage you to consider keeping the horse(s) even if your dd can't ride. I rode horses when I was a teenager. I spent 3-5 hours each day with my horse (in a full board situation in which I had no real care taking duties). I rode an hour or so, and spent the rest of the time brushing, bathing, cuddling, re-cleaning her already-clean stall, and all other forms of care taking for my horse. I GUARANTEE that the care taking part of the horse thing was 90% of the good I got out of horse ownership. I know horses are really expensive and tons of work. BUT, if you can at all swing it, I'd encourage you not to rush the letting go of the horse. Just embrace "what is" and let go of "what isn't" . . . Taking care of a loved horse, especially one you "own", is a really nurturing, beautiful thing. Especially for a girl who has lost a lot and is suffering. (((hugs))) unfortunetely the horse was placed with a rescue back in March. We really didn't have much choice. And its really a long story but she needed to be out of that barn. She has still be able to see him and he was just placed in a new home. The women that adopted him has been talking with both of us, sending us pictures and my dd even offered her some of tack. We are hoping to take DD out to see him before surgery. I think in the end it worked out, as she will still see him and the women who has him is so respectful of her relationship with him and loves that he came from a loving home. She does want to continue riding but she is being realistic and hoping it can happen in a few years when she is healed and strong. Her surgeon already told her she could continue riding. I agree, it's not all about the riding and when she is strong enough and wants to see or help around horses, she can do that too. 4 Quote Link to comment Share on other sites More sharing options...
trulycrabby Posted October 4, 2016 Share Posted October 4, 2016 Hugs and prayers for your daughter. It has been a long time coming to this point, and I will be praying that the surgery brings significant improvement to her symptoms and quality of life. It sounds like she will be in very capable hands. :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
Jaybee Posted October 4, 2016 Share Posted October 4, 2016 (edited) Oh hugs, I'll be praying for you. Also, I know it isn't the same at all, but if she can't ride, can you get her her own dog, that down the road she can train for say 4-h shows or obedience if she wants, or just snuggle and have someone to be with in the way that only an animal can be. Or eventually look into raising miniature horses or something like that. We all know it isn't the same, and aren't trying to fail to acknowledge the enormity of the loss of being able to ride her own special friend. But animals can help provide so much healing. Prayers for you all. ETA: I have followed your story, but didn't pick up on the dates here. Thank you for keeping us informed. Praying your daughter gets relief and healing from the surgery. Praying for peace for you. Edited October 4, 2016 by Jaybee 1 Quote Link to comment Share on other sites More sharing options...
prairiewindmomma Posted October 4, 2016 Share Posted October 4, 2016 Wishing you all the best of luck and a happy healthy recovery! 1 Quote Link to comment Share on other sites More sharing options...
MooCow Posted October 4, 2016 Share Posted October 4, 2016 Prayers Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted October 4, 2016 Author Share Posted October 4, 2016 Or eventually look into raising miniature horses or something like that. We all know it isn't the same, and aren't trying to fail to acknowledge the enormity of the loss of being able to ride her own special friend. But animals can help provide so much healing. Prayers for you all. ETA: I have followed your story, but didn't pick up on the dates here. Thank you for keeping us informed. Praying your daughter gets relief and healing from the surgery. Praying for peace for you. Absolutely. I think a dog would be great for her. It is something we have talked about. We do have five cats, despite what my name is....and she does get a lot of comfort from them at the moment. I am really hoping we might meet a therapy dog while at the hospital. 1 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 5, 2016 Share Posted October 5, 2016 Absolutely. I think a dog would be great for her. It is something we have talked about. We do have five cats, despite what my name is....and she does get a lot of comfort from them at the moment. I am really hoping we might meet a therapy dog while at the hospital. I'm praying the surgery clears up all her issues with balance, vision, etc. But, if it doesn't fully heal her, look into a therapy dog for her. Canine Companions for Independence has a location a few minutes away from me, and they place dogs into all sorts of situations, at NO COST to the cliet/patient/owner/whatever the right word here is. I believe she would qualify for a "skilled companion dog". http://www.cci.org/site/c.cdKGIRNqEmG/b.4011123/k.67D8/Skilled_Companion_Dogs.htm 4 Quote Link to comment Share on other sites More sharing options...
TechWife Posted October 5, 2016 Share Posted October 5, 2016 I am really hoping we might meet a therapy dog while at the hospital. Go ahead and request one, and ask for the frequency of visits that you want. Also, be sure to tell the child life specialist when you meet him/her. In our hospital, they are all volunteers and while each volunteer has a set schedule, they head to different areas of the hospital. If they know she wants to see one every day ahead of time, whoever is in charge of scheduling them can try to make that happen. We have "pediatric dogs" and "rehab dogs," for example, but if a pediatric patient has requested daily visits, a rehab dog will fill in if needed. I've seen these sweet dogs dry many a tear and bring out smiles galore! 4 Quote Link to comment Share on other sites More sharing options...
fourcatmom Posted October 5, 2016 Author Share Posted October 5, 2016 I'm praying the surgery clears up all her issues with balance, vision, etc. But, if it doesn't fully heal her, look into a therapy dog for her. Canine Companions for Independence has a location a few minutes away from me, and they place dogs into all sorts of situations, at NO COST to the cliet/patient/owner/whatever the right word here is. I believe she would qualify for a "skilled companion dog". http://www.cci.org/site/c.cdKGIRNqEmG/b.4011123/k.67D8/Skilled_Companion_Dogs.htm We actually visited them back in March of this year. She was in LOVE! We went with our homeschool group and everyone was amazed at how interactive she was and how happy she was that day! It was quite the eye opener for me. I haven't been sure she would qualify for one though either. I will have to look into this more. There is actually one not far from the hospital where she is having the surgery done. Go ahead and request one, and ask for the frequency of visits that you want. Also, be sure to tell the child life specialist when you meet him/her. In our hospital, they are all volunteers and while each volunteer has a set schedule, they head to different areas of the hospital. If they know she wants to see one every day ahead of time, whoever is in charge of scheduling them can try to make that happen. We have "pediatric dogs" and "rehab dogs," for example, but if a pediatric patient has requested daily visits, a rehab dog will fill in if needed. I've seen these sweet dogs dry many a tear and bring out smiles galore! I had no idea I could request it! I have to call Child Life to schedule a hospital tour so I will ask about it. Since the hospital is over 3 hours away from us I am not expecting her to get many visitors and I think that is going to be hard so I keep thinking about the dogs...I know they would cheer her up. I have also thought about requesting a wish for her. I contacted Kids Wish Network and have the paperwork but I haven't talked to her doctor yet. I just don't know again if she would qualify. I asked her what she would wish for (since it's part of the paperwork) and she said a makeover and/or shopping. This kid just desperately wants to feel better about herself. My heart just hurts for her. Anyways...thank you for all the support. I will put in the request tomorrow. 4 Quote Link to comment Share on other sites More sharing options...
ktgrok Posted October 5, 2016 Share Posted October 5, 2016 We actually visited them back in March of this year. She was in LOVE! We went with our homeschool group and everyone was amazed at how interactive she was and how happy she was that day! It was quite the eye opener for me. I haven't been sure she would qualify for one though either. I will have to look into this more. There is actually one not far from the hospital where she is having the surgery done. With the limits she has now, I'm pretty sure she would. How she is after surgery of course, we don't know. But it would be the skilled companion dog, not the service dog. Quote Link to comment Share on other sites More sharing options...
38carrots Posted October 5, 2016 Share Posted October 5, 2016 Sending your sweet girl and you lots of hugs and good thoughts. Quote Link to comment Share on other sites More sharing options...
Ottakee Posted October 5, 2016 Share Posted October 5, 2016 Hoping it all goes well. I know 2 kids that have had the surgery and done very well. Go for the wish of she qualifies. My girls each did Make A Wish and it was wonderful. 2 Quote Link to comment Share on other sites More sharing options...
Ottakee Posted October 5, 2016 Share Posted October 5, 2016 Hoping it all goes well. I know 2 kids that have had the surgery and done very well. Go for the wish of she qualifies. My girls each did Make A Wish and it was wonderful. 2 Quote Link to comment Share on other sites More sharing options...
Twigs Posted October 5, 2016 Share Posted October 5, 2016 :grouphug: :grouphug: :grouphug: 1 Quote Link to comment Share on other sites More sharing options...
happi duck Posted October 5, 2016 Share Posted October 5, 2016 (hugs) 1 Quote Link to comment Share on other sites More sharing options...
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