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SHE CHANGED OUR LIVES...

imani'smom

September 2010

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WALKER!

Jul 21, 2010 06:41am (EST)

Yes! We have her walker

. The day before our appointment with Shriners, I saw our PT and she said she was able to get one through Early Steps. I cancelled the Shriners appointment and on Monday her spify new walker was delivered. It is a posterior walker, which means Imani has to adjust to it. She walks by pushing a little push toy, and tends to lean forward. The walker corrects that and kinda makes her stand up straight, where she has to remember to hold on. We are leaving it around the house so she can play with it, push it around walking on her knees to get her thinking its a new toy and not "another piece of equipment". She did take a few steps with it yesterday, I understand its a process, I am hoping when she feels and sees how independent the walker will make her, she will want to use it.

Next Monday we have our yearly EI evaluation

. I am so not looking forward to it... I never really am, but this one I know is going to be much more painful than others. Now we start talking about transitioning her into the school system. I am hoping she will be walking independently by then but that might not happen. Taking her to a school setting when she isnt walking and has a very limited vocabulary, worries me. I know I shouldn't worry about that now, it is several months away, but I cant help it.

On a much happier note, it has been about 4 months since I started working out and I have lost 10lbs and dropped a dress size

! Ever since Imani was born I fell into a slump, will not say I was depressed, just in a state of blah. I feel so much better now, I guess sweating like a beast in spin class helps to release the stresses of my everyday life.

Here is a picture of the walker... Next time I will try to upload one of her USING it!

untitled

Posted by imani'smom | Comments: (1) | Permalink

SHRINERS

Jun 27, 2010 05:34pm (EST)

Our appointment with Shriners went OK. We did not get a walker for her, not yet. They need to do a medical necessity exam in order to get her one, and they didnt have any loners she could use in the meantime. We are waiting for their PT department to call us and schedule the evaluation. Imani did walk a bit for the nurse practioner and she did say she thinks she would benefit from one.

Little girl isnt little any more, she weighed in at almost 25lbs and is about 35inches!!

Once again, they took xrays of her feet. The doctor said she still has a deformity but it does not require surgery and that the AFO's will help correct her standing. They also measured her legs for her apparent leg length difference and again, all normal. This time they checked her spine, thinking the difference could be due to something wrong with her spine, but that also is normal. The NP thinks once she starts walking independently and is stronger, her legs will straighten out and her leg length should look the same.

As for me, this living apart is getting old. We are thinking about me moving out to MS without a job, but not until the start of the fall semester. I have always worked, at 12 I worked in my uncles office making copies, filing, answer phones etc. Leaving without a job, although may sound awesome for some, is scary for me. Like I always say, I work because I need to not because I think its fun. Yea, I like what I do, but having a comfy life without the need to work is a much better idea

.

On a side note, I dont know if any of you have seen the preview for the new show on the Discovery Channel - NICU. I plan on watching it. I hope its realistic... it would be a shame if the show sugar coats the NICU experience for the baby and the family.

This is it for now... I hope everyone is doing well!

Posted by imani'smom | Comments: (2) | Permalink

ANOTHER UPDATE

Jun 18, 2010 07:36am (EST)

I have been so out of touch with Share, it makes me feel so bad, but I made a promise to myself that I will change that...

Imani is doing well. Health wise, she is great... She is getting really tall. I weighed her at home and she seems to have lost a pound but she eats like a grown man, so I just dont think its something to do with her appetite. Last night at a birthday party she ate a bowl of pasta, a slice of pizza, 1/2 a cinnabun, a brownie and a cupcake.. of course this is not her normal meal, but it is her normal consumption!

She now takes steps but only with assistance, yes she looks a bit crazy throwing her legs and looking down at them like "hey so thats what you are here for?!".

Now that she is mobile, I find myself chasing her- I cant express how good I feel when I set her on the floor at the playground and next thing I know she has crawled away to explore. I always looked at other moms with envy when they would chase after their little ones. Yea, its 1.5 years after the standard time to do this, but I still smile as I get her

Next week we head to Shriners! I hope to post pictures of her in her new walker

Posted by imani'smom | Comments: (3) | Permalink

UPDATE

Apr 11, 2010 03:58pm (EST)

It has been a long time since I have updated. Time seems to fly by and I never seem to get a chance to sit down and update everyone. Imani and I are still in Florida living with my parents. It has been 3 months since DH left to MS and I am still looking for work with absolutely no success. Even though I have my parents and family around, Imani not being with her dad is hard on all of us.

Update on Imani: She has made good progress in both speech and PT. She is finally crawling on all fours, not just her army style crawl. She is pulling up to stand against the sofa and has even taken a few cruising steps. Its so awesome to see her improvements! Our PT wants us to go back to Shriners to get her a walker. Seems EI doesnt have the budget to provide Imani with one and since she is 2, they dont want to spend the money for a child that has a year left in their program.

Her speech is still very delayed, but she is definitely understanding more and more. She is starting to repeat words and understand the meaning of them. You can tell her "other hand" to use her other hand to write, and she moves the crayon over and "writes". She is also now a great pointer. This helps the most. Before she would cry and scream for something, now she points, cries and screams

but at least we know what she is asking for.

Yesterday, we spent the day at the water park at the YMCA. My cousin had her 4 boys with her and I brought Imani. Her 3rd son is Imani's age. Her sons are all very sweet to Imani and even the 2 year old calls her "baby Imani", considering Imani is older, its kinda funny. All in all she did really good... she interacted with the kids, got annoyed when her cousin took her apple and hand wrestled it back from him. Seeing another 2 year old behave "normally" is a stark reminder of how much further she needs to go, but I also know she is my blessing. She is a reminder of all things that are possible.

Well, this is as much time I was given to update -- My boss (Ms. Imani) has my pc time limited

Posted by imani'smom | Comments: (3) | Permalink

ALL GOOD!

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!

Posted by imani'smom | Comments: (3) | Permalink

PROGRESS!

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!

Posted by imani'smom | Comments: (4) | Permalink

ONE STEP CLOSER

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.

Posted by imani'smom | Comments: (2) | Permalink

THERAPY

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!

Posted by imani'smom | Comments: (3) | Permalink

APPOINTMENTS

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..

Posted by imani'smom | Comments: (2) | Permalink

SHRINERS: TAKE 3!

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!

Posted by imani'smom | Comments: (4) | Permalink

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