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Hey girlie...not sure if you used the mailboxes much but decided to start one for you anyways...I hope you are starting to feel better now..how are the infections? I know you were really struggling with bladder infections...keep us posted on how you & the kids are doing..huggz..Angel  |
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Angel, Things have been crazy here!!! On Sept 20, Ash fell at school off of the slide & I was called to rush her to the ER. She bleed alot since the cut was in her head, but the school nurse put those butterfly things on the cut to help with the bleeding, which helped alot. Thank God that it was not worse. Getting that call was scarey. Ash is having balance issues & we see her neurologist on Oct 12. I hope she can help so no more accidents like this happens. The week before this accident Ash was diagnosed with allergies & is on meds for it, which I don't think are working 100%, but was told that is normal. Her 1 eye is swelling at times. Not much we can do since she is 5. We don't want to do anymore testing until next summer. We decided that it was time for a break. We put Ash into CCD & she is learning to play soccer with the special olympics. Both of these are on Sundays. Soccer goes to the 23rd of Oct. Every Thursday Ash has her therapy that I take her to, but the last 2 weeks I could not take her. She had to rest from her fall & the week before no money for the extra gas. We decided that we are not doing this therapy until summer is here. I think full day Kindergarten & everything else is too much for her. Sundays are long days. The only day home is Saturdays for Ash. I am going to do the sessions of therapy myself. I know what the therapists do. Noah is doing very well. He walks, talks, & now he can climb onto the couch. We did not have this with Ash until she was a lot older than he is (17 mos). I am fine. No pain & no endo. I had my yearly exam earlier this month & no pain. I could not believe that I had no pain. My RE said that the endo is gone, but I am considered about the cramps that I get from time to time. They are not bad every month, but I am to take Midol, etc at the first sign. I don't understand why bad cramps are back. Next month is busy for us. Too many appointments. Noah has his 18th month checkup. Hard to believe that he will be 18 months. Ash is seeing a counselor on Oct 3 for behavioral problems & her neurologist Oct 12. Most days Ash does not listen to me & I can not take this anymore so it is time to see the counselor again. I see my pcp about my sleep apnea (hate this disease & the cpap machine) & my anxiety Oct 7. My birthday is next month. I love the month of October. Decorating for Halloween is one of my favorite things to do with Ash. In the last month, I joined some Incredimail groups on Yahoo & I am hooked. I get some great stuff coming through my inbox. Extras & name tags, which I will share with everyone here. Take care, |
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wow...you are a busy girlie...I'm sorry to hear about Ash..I don't know how you do it..my sister in law has a daughter with Batten's disease ..which is a disease that slowly shuts her brain down...she's 12 now and she was dxed when she was 5 ..they didn't expect her to live the year..so she is doing awesome ..but it's because of her mom & dad's care...You girls who have children with disablities amaze me..especially when you have endo to boot...I'm so proud of you...& I know it must be hard at times..so always know you can vent here..we are here for ya girl... Glad to her Noah is doing so well...my oldest was fast doing things..and my daughter was slow..she had ear problems and I think it affected her balance.. Also glad to hear that your endo is down to a dull roar..any doc that says you are cured should have his head examined..lol..as there is no cure for endo..but you can go into remission for years...so I will pray that is the case for you...as for the cramps..could be some adhesions pulling or swelling inside causing pressure...hopefully that's all it is..liquid advil helps for a lot of this pain..so maybe try it too...I belong to a couple IM groups too..if you ever want any stationary let me know ..I have tons of it..lol..and I look forward to seeing your snags...anyhoo better run..lots to do around her..take care..huggz and prayers coming your way..Angel |
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Angel, Things were alot worse in the beginning with Ash. All of her appointments & tests were a lot. She had 3 hours of in house therapy a week. On Thursday, we said good bye to her 2 private therapists. Shawn & I decided that it was time that Ash got a break from therapy outside of school. Friday I took Ash to visit her old preschool to show her teachers she is doing well. Ash had a half day of school. Then, we went to Walmart. It was nice to have Ash to myself & she was so well behaved. I love how kids outlive what their doctors told their parents. That is awesome that your sil's daughter is doing well. Kids with disabilities are so strong & they can get through anything. I have learned that taking one day at a time is best. I learned from endo to push for answers & I have been doing that with Ash's health. Once spring is here, Ash will be undergoing more tests at the Cleveland clinic unless she gets worse. I have watched Ash go from a non talking not walking little girl to a non stop talking walking kid. Ash's ped thinks her mitochrondia (sp?) is the problem, but getting someone to diagnose it is so slim. I did not think about adhesions. I think that this could be it. I feel like something more is going on. I am going to go read more posts. |
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It's nice you guys will get a bit of a break..must get hard doing all the running around on all of you..As for my niece..it is wonderful that they outlive what the docs say..the only thing there isn't much of a life left over the last few years...she hasn't been able to talk since she was 5...and she hasn't even responded in the last few years...it's a lot of work..she doesn't walk, sit, etc..she just lays in a bed..and then every couple hours they do phsiotherapy on her for about half hour to keep her muscles moving, suctioning her and therapy to keep her lungs clear and she's been tube fed since after the first year of dxing...so it's been a very hard life for them...they have a younger son who is really starting to feel it now as he is getting older...last time he was here he told my daughters bf that the only time he has a life is when he's with us...sad..makes me want to cry... I'm so glad though that Ashley is improving...that is awesome...I will keep her and all of you in my prayers that things will continue to get better...thanx for sharing with me..many huggz.. |
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The story about your niece makes me want to cry. I can not imagine what life would be like. How old is their youngest? Does he understand? It is the saddest thing when children have disabilities. I know we are very lucky & that there are children who are worse than Ashleigh. In my one IM group, I met this lady that her oldest as EB. I can not remember the full name of this awful disease, but it deals with the skin & blisters. It breaks my heart to see her son bandaged up. Ash saw her new counselor today. We took her to 1 to someone that is a lot closer than the other one, but I like the one that is further from us better!!! We are going to be taking Ash there next Monday & the following Monday. Then, the visits will be spread out. I think it is a good idea for her to see someone to explain why she is different. Things will get better. Off to read more posts. I actually have free time. Noah is napping & we took Ash to school. I love having her in all day Kindergarten... |
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Hi Melissa, Just wanted to thanku for the welcome and also to say i have saved the 9 Tags from tht site! They r awesome!! Thanku so much! Bless Ya! |
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Lu, Your welcome. I am glad you like the tags. I don't have any tags yet, but I will soon. Melissa |
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Hey Melissa!! I have saved the extra 4 tags tht r in my folder, so i have saved all 13 of them!!! Thanks heaps! they r soooo cool |
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Hey Melissa, Thanks for the new tags, they're awesome |
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Lu, I am so glad you like them. Once Angel comes back, I will be tagging some blank tags I have found. I have another fotki site for the endo group I co run/own with their names & I have an album there ready for some blank tags I will have them up for requests. |
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I have more to send to you & everyone else. I have put your name along with some other's on tags that are up for requests. Glad that you like them. Melissa |
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Sending ya heaps of healing hugs!! U and ur littl'uns are in my thoughts and prayers..... Love n hugs |
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Lu You are so sweet. Thanks. |
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Sorry Melissa..I have not been to my mailbox for awhile....life is so crazy right now...thank you for the tags you put in there...they are beautiful...and I'm sorry I haven't had the chance to post the other ones on the folki site that you have sent the last couple weeks..just have been too sick..and thank you also for the wonderful thoughts and prayers for my niece..my nephew is 10 and yes he is aware of what is going on..he doesn't know anything different...that's all he has known ..his sister got sick when he was 3...it's tough on the little guy though...and yes it is very sad..I'm so far behind it seems these days on the board..I never seem to catch up..I'm hoping this cold will take a hike so I can get on with my life..lol..I hope all works out well with Ashley..keep us posted..huggz..Angel |
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