Eligibility Meeting

So, Harlie's eligibility meeting was this morning. I was a little anxious. I've heard some bad things about special education services in my county. Plus, I had no idea what to expect.

Well, I am very happy to tell you that it was as wonderful of an experience as that kind of thing can be. There were six of us total (counting myself) and everyone was very nice (including myself). We went over the reports from the speech and physical therapists that evaluated her over a month ago. I have to say that I was very impressed with the detail in the reports. And they seemed to very much remember the evaluation, which I thought was good.

They showed me her scores from the "testing." The average range for kids is between 85 - 115. Her Total Language score was 69, Auditory Comprehension was 73 and her Expressive Communication was 71. Clearly all lower than the average range. I know why, of course, so the numbers shouldn't bother me. I know she's smart, she just can't get it out of her head yet. But seeing the numbers, being in a room discussing her challenges, and hearing "this states that Harlie is eligible to receive special education services" just made me so sad. I am so happy that Harlie is doing so great. She's far exceeded every one's expectations. But there are moments when I just wish that things could have been different. Better. Normal. Like what most people get to experience. But clearly, that is not the way it was supposed to be. Anyway, so I cried a little bit. Which made me feel so stupid. I tried to hide it, but then they handed me a tissue. Part of it was sadness, but part of it was relief that we all seemed to be on the same side, wanting the best for my sweet girl, and that I wouldn't have to fight for services for her. Wow.

And as an added pleasant surprise - she also qualified for physical therapy, too! So, the speech therapist recommended that she receive two 30-minute sessions per week and the physical therapist recommended one 30-minute session per week. That's way more than I expected. I was just hoping for one 30-minute speech therapy session. So, I'm thrilled. Now the tricky part will be scheduling all of this therapy! Hopefully she will be able to receive therapy at Murphy's elementary school, which is at the end of our street (walking distance). That way Brandy can walk her down vs. me having to drive her some where else.

Oh! And the physical therapist that was there suggested she get some adaptive seating during her speech therapies due to her spinal issues. She said that when she observed her last month that she noticed that she "side sits" and that she's clearly compensating for her curved spine and rotated hips. So, she said it's possible that sitting in a seat for a longer period of time might not be possible for her. WOW! That totally makes sense! Not to mention that my speech therapist has had some difficulty keeping Harlie in one place during her sessions. That would totally explain her "ants in her pants" behavior!!!! WOW! So, they said a physical therapist will have to observe her speech therapy session to see what they think. They said if she's having to work extra hard to sit in a chair that it might not allow her to concentrate on speech therapy because she's uncomfortable or just working so hard to stay balanced. Seriously - WOW!

And they said that we need to have an occupational therapist evaluate her at some point, too, so we can address those areas if needed. The only occupational therapy she's gotten so far has been concentrated on feeding. So, they want to see other areas of OT like fine motor skills. Aren't you impressed? Because I am. Very thorough they were. So, now she has an IEP (Individualized Education Plan) that spells out specific goals we want her to accomplish. And it will be reviewed in six months.

Anyway, beginning a few weeks into September, Harlie will have a total of SEVEN therapy sessions per week! Yes, in FIVE days she will have SEVEN therapy appointments:

2 one-hour feeding therapies
1 one-hour speech therapy
2 30-minute speech therapies
1 one-hour physical therapy
1 30-minute physical therapy

And somehow I will try to keep two half-days per week untouched for preschool. Ugh! I really don't know how I'm going to juggle it all. And to make things even more complicated I am trying to get Murphy into a regular swim class that meets twice a week. Oh, and I'm training for a half marathon so I have to run three week days per week (long runs on Saturday) - no joke. I guess I will just see how it all works out, and then go from there. They said that I should hear from the school therapists by the end of next week to find out what times they are available. Until then, I'll just keep my fingers crossed that they have times that work out for us.

So, I will leave you with a quote I found in my calendar the other day. I'm thinking that it fits pretty well with today's post.

Don't ask for a light load, but rather ask for a strong back.

~Anonymous

Ahhhh, this is the life!
~Christy

We have a date.

So, they called and gave me a date. A date for her third heart surgery - the Fontan. It is April 2nd. Wowzers. It felt so weird to write it in my calendar. I wanted to laugh and cry at the same time. It will be nice to get this behind us, to have Harlie's heart function better and to see some better numbers on her monitor for a change! But, I know what lies ahead and it's not pretty.

We have to go up to DC the day before for her pre-op stuff. Then we will have to stay the night up there and then take her back to the hospital first thing in the morning. I can't help but feel bad that she has NO idea of what's coming. I suppose it is better that way. But, still...

Well, sadly, tomorrow we have our last session with Beth, Harlie's speech therapist. We will certainly miss her and I really hope that we will see her again. Murphy took right to her, too and I know he will miss her, too.

Luckily, for Harlie's feeding therapy we will get the same OT that we had from the beginning, Allison. She used to come to our house for feeding therapy until she moved to the clinic at the Children's Hospital here in Richmond. So, since we are losing Beth, it just worked out great that we can get Allison again. Although now instead of them coming to our house for therapy, we will have to go to the clinic. Budget cuts with the state, blah, blah... So, we go on Friday to see Allison. And we will also get Harlie's blenderized diet recipe. I am really excited about that. I am crossing my fingers that she won't have a reaction to anything in it. Normally, you introduce foods one at a time, but putting a child on a blenderized diet doesn't really allow you that kind of time. So, we're taking a risk, but I think it's a low one.

Beth also did one hour a week working on communication with Harlie. So, we will meet a new person on Monday for our first session of speech therapy. I hope we like her and that Harlie takes to her.

Well, that's it for tonight. I am going to get off the computer so I can relax for a little bit.

Take care,
Christy

Going on Vacation!

I hope you all had a Happy 4th. Not too much has been going on lately with Harlie. The last two weeks we’ve been getting adjusted to Murphy’s summer school schedule. He only goes Mondays, Wednesdays and Fridays now, so he’s home Tuesdays and Thursdays. Brandy usually has off on Fridays, so between those two factors, I’ve been really busy. Murphy definitely had a hard time adjusting to being home and Tom NOT being home. He kept on thinking whatever day he was home was a weekend.

So, the other night we had dinner, and we started to clear the table. We’ve given Murphy the chore of clearing the table (plates, etc). Well, it didn’t take long for Harlie to watch and want to help. So she started sticking her arms out, like she was asking for us to give her a plate. Curious, we did. And she took the plate and gave it to Murphy to carry into the kitchen. It was so cute! She is always so proud of herself when she does something like that. Anyway, so that’s our new routine now. We give the plates to Harlie, who gives them to Murphy, who carries them into the kitchen. And she’s not very patient. As soon as our plates look empty, she starts holding her arms out.

Well, the other night I left the table a little early and the three of them finished “cleaning up”. The last thing on the table was Murphy’s cup of milk (Murphy and Harlie sit across from each other). When I came back through the dining room, Harlie had grabbed the tablecloth and pulled it toward her until Murphy’s cup of milk was within her grasp. Seriously, how stinking smart is that??? I got there just in time to see her pick it up and pour it “into” her mouth!!! She wants to eat and drink so bad! I am really hoping that means that teaching her will be easier, but we’ll just have to see.

I can’t wait to tell my OT, Allison, about this, though. She has warned me that transitioning her over to oral feeds (and teaching her how to swallow and handle foods in her mouth) can take a lot of time. I really am completely prepared for a long road. If she is a willing participant, I will be happy. I am totally fine with her tube feeding and I actually think it is a really great thing when it comes to giving her meds. So, it’s not like I hate it and want it gone yesterday. That’s more of a trach thing. haha

She also took a piece of popcorn and brought it to her mouth and then laughed hysterically. She thinks it is so funny to pretend to eat.

So, the weekend after we brought Harlie home from her jaw reconstruction, there was a Trach Conference in Cincinnati, Ohio. I wish the timing could have been better so that we could have gone. I would have loved to have met all my trach friends from my support group online. I really would not have survived this journey without them.

Well, one of the moms who organizes this event, put together a video. I added the link to My Favorite Sites page. So, if you have a few minutes, you should take a look (we’re in it). I find it very moving.

Well this will be my last entry for a whole week! We are going on VACATION!!! This is our first one since Harlie came along. My whole family is going and we are all staying in one big house at Lake Anna. I don’t know what we (Harlie and I) are going to do for a week with no therapies, no phone calls, no calendar, no doctor’s appointments… WOW! Hopefully I’ll have some good pictures for you when I get back.

As always, thank you for checking in and I hope you all have a great week. I’ll probably have lots of reading material for you when I get back!

Take care,
Christy

PS - I forgot to tell you that Mike and Marcy brought their baby home after just 2 weeks in the NICU (he was born 7 weeks early). He is doing great and he is very cute - and tiny!

She Grew!

This morning we had our weekly occupational therapy (feeding). The past few months have been going really well. She’s very willing to participate and seems to really enjoy herself. We believe that she has even managed to swallow a few small sips of watered down baby food (sounds yummy, doesn’t it?). But, today was terrible. She did NOT want to participate and made her feelings very clear. Luckily Allison and I agreed that we did not want to force her. We want “mealtimes” to be a pleasant experience. And we only have a few more sessions before the jaw reconstruction, so there’s really no need to push at this point. So, we called it a day with Harlie and that gave Allison and I some time to go over questions for Dr. Magee (the plastic surgeon). The jaw surgery greatly impacts feeding issues, so it was very helpful to hear her questions.

Then after that appointment we rushed down to MCV for her appointment with her pulmonologist and nutritionist. That went really well. It was the first time they had seen her walk. They were all thrilled to see how far she’s come in just a few short months. They always do vitals and weigh and measure her. Her sats were 91 while we were there (which is incredible). The great news is that, for the first time ever, she is FINALLY on the growth chart for length (5th percentile)!!! She is finally 30” tall! Woohoo! She will be 19 months old in 3 days. She said that the walking is doing the trick – your bones need the stimulation of walking to grow well.

Unfortunately, she lost a pound. She was close to 22 pounds at one point, but she is back down to 20 pounds now (and now off the growth chart). But, considering all the walking she’s been doing, and her increased activity level overall, that’s no surprise. We just have to figure out a way to get more calories in her. That is going to prove challenging in the next few months. But, she said that Harlie is still well-nourished, so not to worry.

I did get some conflicting information about possible decannulation (getting the trach out) in the fall. The general practice here is to not decann a child between October and April. In the month after decann, if a child gets a cold it could be very bad and it could mean being re-trached. Harlie’s ENT said he does it anytime of the year. Now the dilemma will be who to put in charge of her decann – her pulmonologist here or her ENT in DC? But, I will cross that bridge later. The first step is to get her through this nissen surgery. If it isn’t successful, her plastic surgeon will not do her jaw reconstruction. So, we’ll just cross each hurdle, one at a time and worry about the other things when they get here.

Her pulmonologist just raved about how well Harlie is doing. She said she looks and sounds the best she has ever been, which I completely agree. In every way she seems to be progressing. She’s even starting to sign more accurately. And one of the best things about her progress is that her cough is stronger and she has been able to clear most of her secretions on her own – without the help of the suction machine. This has been absolutely wonderful. We went from suctioning all the time, to just several times A DAY!!! Wow! I am thrilled with this progress. It means that she is stronger, her lungs are growing and it makes our day so much more enjoyable.

So, that’s about it. Thanks for checking in!

Take care,
Christy