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SHE CHANGED OUR LIVES...
imani'smom |
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ALL GOOD!
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Feb 09, 2010 07:48am (EST)
YES! We started this week. PT called me Sunday right before the big game and said she could see Imani at home for both sessions. So, that’s one down and 2 to go! Much better than we were just a week ago.
Yesterday, we also went to Shriners to pickup her AFO's. They are so cute! I know I was a lot more excited about them than Imani. She of course, cried and screamed when the technician was putting them on her. They needed very little adjustment, but it was still about a 3 1/2 hour appointment.
On Saturday, I bought Imani some new sneakers, one size bigger and in wide, thinking these should be big enough for the brace. They of course didn’t fit, but the technician had some try-on sneakers and because of all the straps, she needed to go up 3 1/2 sizes. She said this was usually not the case, they usually see a size or two bigger. Imani always makes things challenging, so this was no surprise. 
After Shriners, off to the store to exchange them. I found some white ones that fit well but honestly, she looked like big foot! It was horrible, I felt so bad for her. Just as I was leaving, I saw a stray box in her size and these were the ones! They fit and looked much better.
She had the braces on for about 3 hours with absolutely no issues. She didn’t even cry when we put them on her, I think she freaks out more with a stranger touching her and of course, me holding her down. She stood with them for a good bit too, leaning against the coffee table and at one point she even pushed off and was standing all by herself! I know it is very early to see what the braces will do for her, but I do think she does feel more secure with them on.
I hope everyone has a great V-day!
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Posted by imani'smom | Comments: (3) | Permalink
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PROGRESS!
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Feb 05, 2010 08:07am (EST)
After almost 2 weeks of ZERO phone calls, I am now getting one every few hours .
In a gist, it should take about a week to get all her services set up. Authorizations for PT/ST/OT have been sent over to the clinic Imani currently received PT at. The early interventionist will probably take a little longer to set up, but I can live with that.
One problem I am now dealing with is the fact that they are considering changing her PT if she cant do both PT sessions at home. First, Imani is getting a whole new sleuth of therapists, so changing the one that is remaining consistent doesnt settle well with me. Second, I like the fact that she goes to the clinic for one session a week. They have better equipment there and she gets to interact with other kids, even if just for a little bit.
I should hear from the clinic if her PT will be able to stay on under those conditions. If they hint at it not working out, then I will contact the EI people and see if they would let things stay the same.
I honestly cant complain. Earlier this week, I didnt even think we would be this far.
______________________________________________________
Next week, Imani and I fly to MS to visit DH . This will be her first plane ride. I am excited and scared! 
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Posted by imani'smom | Comments: (4) | Permalink
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ONE STEP CLOSER
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Feb 03, 2010 07:07pm (EST)
I have a very fiesty personality, or so I have been told. At the same time, I do pray for patience and have been granted just enough. Even when someone angers me, I can still find a way to work with that person. I have a way of getting along with just about anyone.
That being said, I do not like escalating things. Calling the EI supervisor was a big step for me. I held out hope the coordinator would call or email. Constantly checking my phone/emails for nothing.
Yesterday, in my desperate attempt to get some kind of answers, I even called Imani's former EI nurse. She was always very nice and even she was so upset. She made me feel better, by letting me know, I was doing the right thing. My calls/emails shouldnt be ignored and Imani's file should have been ready by now.
So this afternoon, not having received a returned call from the EI office, I stumbled upon a number in the Dept of Health website. I called and to my great surprise, I was connected to a parent liaison for the EI program. She is a mom of a special needs child, and really understood why I am so frustrated. She said she would send an email with my information and I should receive a response tomorrow. This was 4PM. The supervisor called me at around 4:45PM!! She is a superstar in my eyes!
He apologized and said that the coordinator took some emergency time off-- I dont mean to sound insensitive because I understand things happen, but this does not excuse someone ELSE not taking over her files. He said he would work on Imani's file and get back to me tomorrow with some kind of schedule for therapies to begin. What upset me even more during the conversation is that I could tell NOTHING was done on Imani's file. I could feel him starring at blank screen....
I called DH to tell him how I finally feel like something is going to get done. When I told him the name of the supervisor, it turns out he knows him. DH teaches in the school of social work, so he knows alot of people in the field. He will be giving him a call tomorrow, just to give our file a "personal" touch. I dont need any special favors, I just want to get Imani the services she needs.
I am not bringing out the champagne and celebrating quite yet, we still do not have an OT, ST or EI. Heck I still dont have the authorization for PT, but I do feel like we are finally moving in the right direction and getting one step closer to full services again.
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Posted by imani'smom | Comments: (2) | Permalink
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THERAPY
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Feb 02, 2010 10:01am (EST)
The title is not any indication that we have begun our sessions...its more of a plea or a scream of what we are going through.
First, I have left 3 voice messages and sent 2 emails to our new fabulous coordinator (sense any sarcasm??), with NO response. Not even a "got your message, working on it". Nothing. I finally got a hold of a live person and was able to leave a VM to the coordinator's supervisor. I will give him 24 hours to reply, after that, I am going to spend all day at work tomorrow trying to hunt someone down in Tallahassee. I know I will need lots of luck, patience and answered prayers to actually talk to a live person, but this is so ridiculous.
Imani's PT called and said she will start making calls also to see if she can do something. She also said that when a kid is transferring from one county to another the coordinators are allowed to give the child a 3 week emergency authorization so services are not interrupted, and the coordinator has the time to establish permanent therapy. Why she never offered this is beyond me.
I checked our insurance and unfortunately her PT office is not in a provider, so I cant even take that route.
I am so over this. I feel like playing the lotto, I may actually be more successful in winning that then getting a returned call from our new, fabulous coordinator! 
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Posted by imani'smom | Comments: (3) | Permalink
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APPOINTMENTS
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Jan 27, 2010 01:15pm (EST)
I met with the EI coordinator on Monday. Even though her PT said she could see her ASAP, the sessions of course, have to be approved by everyone in the county and state before she can be seen again!--well thats what it feels like. It is so frustrating! We literally moved 10 minutes away and she is already in the program. I just pray her referrals come through tomorrow so she gets her PT session on Friday.
Appointments. With our insurance changing I now have to get back to work on scheduling all her appointments before our "good" insurance ends next month. So far 24M check up done, eye doctor done, and the geneticist. Boy, was that one difficult to make. Having to tell a stranger over the phone "multiple anomalies and developmental delays" as a description of your child, is hard. No matter how desperate you are for answers. The funny thing is, I feel like I should be used this... When we were pregnant, that was the description of her, when she was born, thats how the NICU described her (well not the delay part, but they threw in severely growth restriction in its place). Leaving the NICU, in the discharge paper work review, there in black and white, "follow up with geneticist, multiple anomalies".
I know I am lucky she is such a happy girl and she is overcoming a lot, it still doesnt take away the sting when everyone around you has an opinion of what your child has that is "not normal".
I dont think I shared this, but every new specialist I have taken her too, has started with "does she have a diagnosis?"... my reply is no, she doesnt but has seen a geneticist and had chromosome analysis and genetic testing, then I get the oh "you know she looks like she has _____". Then I run home and look for this mysterious syndrome on line only to find she fits none of the symptoms or to have another doctor tell me, "no way, she doesnt have that". ARG!
I even took her to an appointment where the doctor couldnt figure out the name of a syndrome she thought Imani had, so she called in a sleuth of nurses and staff members for a "look at her features" visit. It was so annoying... Looking back now I shouldve taken her out of that office.
I do want answers and I hope this entry doesnt make me sound like a person who doesnt want to see... I do want to know if and what she may have. I have just dealt with "anomalies" for almost over 2 years and honestly it is draining.
Sorry for the very long, ranting and probably depressing post..
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Posted by imani'smom | Comments: (2) | Permalink
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SHRINERS: TAKE 3!
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Jan 15, 2010 12:59pm (EST)
We had our appointment today at Shriners-- Love that place!! They fitted her for braces and they will be ready for pickup in a few weeks. My sister came with me, for morale support.
My sister is 2 years older than me and had a stroke 3 years ago. The stroke has left her with partial paralysis (her left side) and she wears a brace. Of course she chose the same pattern for Imani's brace as hers .... so now they will have something in common, lavender butterfly braces .
On a more frustrated side, EI has cut Imani off from services. This makes me so mad! I tried to make the transition from our county to my moms county with soo much notice to avoid this. Basically a minimum of 2 weeks of no therapy. We meet with the new coordinator on 01/25 and I hope we can start therapy that same week. Her ST and PT said they would continue seeing her, we just need to get a new OT and the EI nurse.
I guess not everything goes as planned, no matter how much you do plan!
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Posted by imani'smom | Comments: (4) | Permalink
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JANUARY 4, 2010
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Jan 04, 2010 01:08pm (EST)
I hope everyone had a great New Years!
Before PT started today, her PT went over what she is working on with the new student and asked me about her upcoming ortho appointment with Shriners. Somehow, we got into the subject about ortho's in the area and I said I liked Shriners and would not take Imani back to a "private" ortho again. Our experience with her first doctor was horrible. I happened to just mention his name and she rolled her eyes.  ... I pushed a bit to find out why??? Well, she has had several families who have gone to him and have been unhappy with how he treated their children. Although, I know I did the right thing taking her out of office, its just great when someone confirms you arent going crazy!
I noticed in her last PT session that if she sees me she will beg and cry for me to save her. Today I tested it again and walked out of site when she cried--yup she took a few deep breathes and calmed down. I am feeling like my presence at PT is interfering?? I want her to get the most of her sessions at the same time I like being there--- in all honesty it makes me sad. Last week even her ST said Imani did really well, was more focused than normal and made tons of sounds-- and I was not there. I do see most parents sitting in the waiting area for their kids, maybe Imani is "there" now and I may have to take my seat next to other waiting room parents 
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Posted by imani'smom | Comments: (2) | Permalink
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.....
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Dec 21, 2009 08:58am (EST)
We took Imani to her friend's birthday party this weekend at a petting farm. I shouldve known she wasnt’t going to enjoy it, but we took her in hopes she would open up a little. She loves horses, pigs, goats, chickens... all the farm animals--- ON FLASH CARDS. Yea the live things are a bit scary for her. I begged her to pet the black pony, trying to convince her he was "baba" (Imani's nickname for our dog, who is also black). Yup, she didnt fall for that trick. She shook her entire body NO. She doesnt just shake her head NO, she makes sure you understand that its NO, but shaking her entire body.
Before we take her to Shriners for the AFO's we have been working on getting Imani used to having shoes/socks on. Ever since she began PT in the NICU, she developed a really bad sensitivity issue with her feet. I started off with socks, but she soon learned to take those off, then I started putting on those soft leather shoes and now we are up to tolerating sneakers. To think all this desensitizing began about a month ago Dont misunderstand me, she doesnt like standing for log periods of time with her sneakers on, but just getting her to have them on, is a win for all of us. 
We are now in the process of transferring Imani's file to the county my parents live in. I havent heard many happy-go-lucky stories from the EI program there… I know my cousin (whose son was diagnosed with Aspergers) went through a lot trying to get him services. In the end, he missed out on much needed therapy in his early years because they said he scored in the lower end of "normal". This worries me. I already expressed my concerns with our current EI coordinator and she said she will do her best to have Imani's file transferred to someone "good". I honestly wish we could just stay with our current providers, even if this means I would have to drive Imani to a center for services. But, such is life and the system we are in.
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Posted by imani'smom | Comments: (4) | Permalink
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AFO
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Dec 09, 2009 09:04am (EST)
I hope everyone had a great Thanksgiving!
So much has happened since my last entry. First, we finally rented out our house! I am sad yet relieved that process is over. We also found a house in MS. Now we are interviewing moving companies.. scary process.
Imani is definitely more mobile now. She crawls across the room to grab what she wants, mostly Chris's shoes. She has some weird obsession with his shoes! She also learned to crawl (mind you she is still 100% commando style) with toys in her hand . Its really cute, how she drags her body while holding something.
A couple of months ago her PT said once Imani turned 2 she would move on from crawling to walking. I agreed with the decision, even though I always wanted Imani to go through the development progression. I know many kids do not crawl, my nephew went straight to walking, but I just personally feel crawling is important and wanted her to get the most of the process.
We are now approaching 2 years and her PT has decided not to wait for her actual b-day but to start with things now. She called me from my moms house (she sees Imani at my mom's once a week) and asked me to take Imani back to Shriners to get her evaluated for AFO's. She feels Imani needs more support in addition to correcting the way she is currently putting pressure on her feet.
Later that day, my mom called me to see how I was doing. Guess she thought I would be upset at the suggestion that Imani might need braces. In all honesty, I have had the feeling she would need them. I am not sad, disappointed, scared, worried.. nothing. I see the braces as a tool.
Although, I am not sad that she may need the braces.. her struggles anger me. I am angry that she has to work extra hard at everything. I am angry she was born with her feet deformed. I know we cant hide from or ignore this fact.. and in all honesty I do try not to dwell on it.
So now after a break from doctors, we have a sleuth of them awaiting us.
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Posted by imani'smom | Comments: (1) | Permalink
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