Been Forever : an update

It has been such a whirlwind of a summer. Since it is slowly winding down and I am trying really hard to wind stuff up and get things caught up. I thought I would send the before school update.

Ty has done FABULOUS this summer. He didn't qualify for summer school ( boo!) so we decided we would do private therapy until his first surgery of the summer. Of course that never goes to plan and his surgery really messed up the entire month of July and Augusts therapy schedule.

The bonus: we took time off from speech and the toot face is now TALKING. He is doing fabulously well. He picks up 7-8 words A DAY! He is doing really well. Some are not phonetically correct but they are working and functional words.

He received his phenol injections and his tonsils out at the same time in June. Which messed up our casting schedule so we didn't get casts on. I think for summer that works but for winter I would LOVE to see him get casted again.

I am so thankful for Ty and all he is doing. Parenting got HUGELY easier. We hope it continues on the upswing.

The other stuff going on is driving me insane!! Dallas has been sick and he has been in and out of the hospital and them not finding anything. We think it is gal bladder and only have a few more tests before we can finally make them take it out.

We have also been dealing with infertility. 2 years we have tried to get pregnant and have resorted to IUI treatments only to have our meds TRIPLE the cost from our first month so we have had to take a step back. It has been the HARDEST thing for me EVER.

But that is us.

Question

Hey ladies, I haven't posted in a long time on this blog.  Our focus has been shifted to my husband for the last few months, he's been battling small bowel cancer.  Things are looking a little on the up and up in that department and I've been able to shift more of my attention back on my girls medical/therapeutic needs.

Reagan, my 2.5 year old, is doing really well.  Her microcephaly is still present but it seems the main thing it has effected is her balance... which could also be because of the mild CP.  At any rate, right at this moment we are very happy with her progress.  She's eating, saying 2 word sentences, walking, and identifying objects.  Hurray.  We know success is volatile with kids, but we're very happy she's in a good place right now -especially with our extenuating family circumstances.

Jaylee, my 7 year old, is the one I need your advice about.  They have retested her hearing and she qualifies for a personal FM system, which I think will be of immense help.  I've joined an ADHD support group here in Atlanta and have been getting great ideas for positive reenforcement, organization skills, and daily functionality (if any of you are interested I'd be happy to post).  However, the common thread that has occured at these meetings is the difference between ADHD and LD's.  OR the fact that they can both exists and exacerbate the other.  Jaylee is struggling in school, we know she has a cognitive delay, but I'm concerned that that's not the only issue.  She eventually learns the subject, albiet it takes her 3 months, she eventually grasps.  However, that 3 month gap is really effecting her confidence and such at school.  She also struggles with social cues.  Sooo.... we're doing our best to read about ADHD and social helps, we're also wanting to get her tested for any LD's. We've been working with the school system regarding her cognitive delay and it's just getting nowhere.

There is a wonderful program in Atlanta called "Beyond Words."  It works with the kids individually and in group therapy to find good coping strategies, teaches them social cues, and helps us in our daily parenting to reenforce those coping mechanisms.  Plus, it's legal health documents that will help us with our fight to get classroom modifications at school.

Here's the kicker.  They don't take insurance and just the evaluation alone is $560.  That's not including therapy or family sessions or anything on a routine basis.  They have a fantastic summer day camp for ADHD/Autistic/ADD/PDD but for every two weeks it's $860.  Ouch.

So, my fellow Tulip Moms, do you know of any financial grants out there that we could apply for? Any lottery numbers you feel good about? (haha)  Both my husband and I feel like Jaylee (and by extension, our family) would greatly benefit.  Do you know of any savvy ways to talk to the programs about financial plans? Or proposing payments?  I haven't hit the "we don't take insurance" or the "insurance doesn't cover this" bump like a lot of you have in the past... this is our first time..... help?!?!

Question

I know I just posted yesterday, but I have a question.  For those of you familiar with walkers. We've been watching Reagan for awhile now and trying different things to get her to stand.  It seems like when she receives extra support she's more willing to stand and attempt walking.  Most of the time the support needs to be in her chest region.  Our PT suggested we add a snug seat to our pediatric walker.  She said that the Gait Trainer might be too cumbersome and that Reagan didn't need that much support, but that a Snug Seat would be her best bet.  Have any of you ever used these?  What are your thoughts?  

Btw, we got her DAFO's yesterday. She screamed the entire time we were putting them on and adjusting.  Eventually she got used to them and stop whimpering.  It sure made me feel bad but it was amazing the change in her leg tone with the DAFO's.  Craziness.  I'm heading to the store today to buy socks and shoes! Wish me luck! 

DAFO's and Pediatric Walker

It's official.  These two things are going to be a permanent fixture in our home.  We've had the walker for two months now, but our PT told us today she would be surprised if Reagan was going to be able to be without the walker a year from now.  So now starts the process of trying to get our insurance to help cover the walker. 

Reagan was measured for her DAFO's today.  It was bittersweet.  I cried after our PT left.  I'm grateful for these devices, I'm grateful for a PT.  I know the braces will help her, but it's just another one of those little things that remind me our path is slightly different than others.  Hence the crying.  

We just ordered them and since we're paying out of pocket they should be here by the end of next week.  I would love to hear anything about DAFO's...  other than what my PT has told me I have no clue how to work them.  Do they wear them all day and all night?  Or just in the daytime? How long did it take your child to get adjusted to the extra weight?  Right now I have Reagan shoeless because she balances easier and is more willing to walk that way.  It sounds like the DAFO's work best with shoes on.  Right?   For those of you who have DAFO's, what has your experience been?  I know we'll have to buy bigger shoes.  Any suggestions? I don't even know how to put them on her.  Help!

Taking the moment

Last night as we were doing the hustle and bustle of night time routines and night time work, I almost missed the moment.

You know, the moments where you sit back and smile and think "wow, he is mine."

The week has been a tantrum of a week. We have been asked to start trying to send him into PT and OT alone. It has taken the entire session to get him to stop crying. We did it with Speech today and he cried for a while as well. It is tiring. It is exhausting and it is emotionally sometimes more than I can take and wonder how much more I can handle. All I want is to have a conversation, a simple one. All I want is to talk to my son.

Where is my magic wand?

On nights like last night I wonder how I got to be so lucky. He lays there in his big boy bed all sweet, quiet and an angel. It takes my breathe away.

Miracles Happen!

Hi! I'm Lori.

Hi. I’m Lori. I’m new to Thru The Tulips. I’m really excited about “meeting” all of you and sharing our experiences, frustrations and joys together. My story is long and you can read more about details on my personal blog on this link and this link. Basically, in a nutshell, I am a mother of two micropreemies. Jaylee was born at 26 weeks weighing 2 lbs 2 oz. Reagan was born at 25 weeks weighing 1 lb 12 oz. Jaylee is a month shy from turning 6 and is nearly caught up. Her life has been full of challenges, special education, and pretty much anything you could throw at her therapy-wise. She had Cytomegalovirus which caused her hearing to be damaged from birth until age 4.5. During these years we unsuccessfully tried everything in the books and with therapists to help her communicate. At age 3 she was saying about 20 words and the doctors were considering diagnosing her with Autism. She was attending the Utah Schools for the Deaf and we were learning how to raise a hearing impaired child (deaf in her left ear, with the hearing aide 80% in her right) Fall of 2006 we had a miracle and her hearing slowly started returning. They can only surmise that the CMV did not actually cause permanent brain damage to the language center, just suppressed it’s ability to work. When the virus starting leaving her body (it usually stays for 4 years) her brain was able to process sounds. If you met Jaylee today you’d never believe that she ever had a hearing impairment. (her hearing is now 60% in her left ear and 80% in her right ear). Her verbal skills are awesome and we are so proud of the progress she has made. Her long-term issues stemming from the CMV and prematurity are a mild case of Ataxic Cerebal Palsy in her left side and ADHD. She can’t ride a bike, her conginitve processing abilities are slower than her peers, and she is a super big ball of hyperactivity, hyperfocus and overstimulation. But, man, she is one of the happiest kids I know. For what Jaylee’s life could have been like with CMV we are so grateful for the “small” problems JJ has. She is super sweet, smart, and such a loveable kiddo. Jaylee is in Kindergarten and is loving it. She loves to draw, write, and work on hands-on projects. Learning to read is proving to be a hard thing. JJ does really well with “rote” things but when you have to take them and process it to make an abstract notion we lose her.

Reagan is a sweet little babe. She is now 16 months old, 12.5 months adjusted. Since she is still young her life is still very unknown. She has the most determined personality I’ve ever met so if anyone will overcome the odds in her direction, she can. Reagan had a grade III head bleed while in the NICU and has seen some damage because of it. Luckily we’ve had her in physical therapy since she was 5 months old and it has helped her muscle tone quite a bit. Her tone is still very stiff and she has a hard time with gross motor skills. She just learned how to crawl two months ago and we’re working on cruising with her right now. We just got on the list for a walker and they will be watching her over the next two months to determine if she needs leg braces. Reagan was also recently diagnosed with Microcephaly.

My girls are awesome and I’m so lucky to be able to parent these sweet girls. For as draining as it is to have two children with special needs I feel very blessed for the opportunity to know what I do going into it with my eyes wide open on our second child. We have learned a lot over the 5 years of therapy with Jaylee that has been invaluable to our experiences with Reagan. I’m a stay-at-home right now and enjoy the time I have with my kids. I have an awesome husband who loves our little girls fiercely as life itself. I love running, working out, reading, writing, blogging, and am completely addicted to LOST. Thanks for inviting me along!