Boy.

I have noticed some jumps in Payton's speech and communication over the past few weeks ... I'm not sure what has prompted it, but I'll take it!

Her favorite new word is 'boy' ... she calls Mason 'boy' and it gets on his last nerve. Ha. 

"My name is Mason!"

She doesn't care what he says. Ha.

The way she says 'boy' ... boieee. So cute. And 'blue' ... that is her new favorite color ... everything she wants is bluuuu.

Here she is, little stinker ...

I could just eat her up.

I have wanted to post a video of Payton's speech for awhile now ... I just never do.

I never do because as soon as I go back to watch it ... I realize just how delayed her speech is. I mean ... we communicate fine. But seeing on video how delayed her speech is ... it breaks my heart.

I just want baby girl to be able to talk. I want her to be able to converse with her friends. And although she does all of this in her own way ... I yearn for the day that she can just speak a full sentence.

At the same time ... this is her. And dangnabbit ... I could just eat her up.

So here she is ... age 4 years 1 month ...

Ms. Payton

Isn't she beautiful? Clearly I'm biased, but seriously ... I could look at her all day long and never get bored. I'm sure lots of you don't understand that, but oh well. Haha.

The past few weeks have led to some changes for Payton. I pulled her out of Mom's Morning Out. I was on the fence about doing this because I liked that it was an environment for her to be exposed to her typical peers, but we have more important things to do right now. Plus ... I'm not convinced that her teachers for good advocates for her, as far as pulling her along with the class. Err something.

So more important things are on our plate. Like more intensive speech therapy. My girl is getting frustrated. Frustrated that she can't verbally tell us what she wants. Frustrated that she can't always make us understand. Pretty much frustrated that she can't talk. It is leading to meltdowns and quite frankly, frustration among us all.

I had her evaluated by a private speech therapist ... and they are wanting to see her twice per week. On the surface that sounds fine and dandy, but logistically I do not know if it is possible. I am going to try to get her in during the time that she would have been at Mom's Morning Out, but if the timing is not just right, there is no way I can drop off Mason at school, get to therapy (30 miles from our house) and get back to pick Mason up on time.

Logistics, people. Logistics.

We also are still waiting for her special needs school to conduct a speech evaluation on her. I'm confident that once they finally get it done, she will be getting speech for at least a few minutes per day at school. But ... at this point I don't have much faith that the friggin evaluation will be even be completed by the end of school. I hope they prove me wrong.

And ... we are going to start the See and Learn Program. Has anyone else used this program?

Services

When you have a special needs child, fighting for them becomes your life.

And it gets tiring, but they are so worth it.

After Payton was born, we had her evaluated by Early Intervention. It was decided at that point that she would get physical therapy. I was not necessarily happy with just physical therapy, but I wasn't sure my voice would matter.

And so we went with it.

When she was about nine months old, our geneticist told us that Payton needed to be getting speech therapy services from the county. So I used my voice and asked for it ... and we got it.

Up until she was two years old, physical therapy and speech therapy were the services that we got from the county. We were told we couldn't have more than two services and that if we wanted occupational therapy or an infant educator, that we would have to drop one of her other therapies.

Why does it work that way in my state? I have no idea. But it sucks.

I can't remember exactly when ... perhaps after her first birthday ... but we began taking Payton to see Pat Winders at the Kennedy Krieger Institute for physical therapy. Pat is an amazingly talented physical therapist for kids with Down syndrome. She also wrote the book Gross Motor Skills in Children with Down syndrome and we were just very blessed to have her for a therapist, even if just for a short time before she moved on us.

In light of the therapy with Pat and the fact that Payton walked at 17 months, we decided to drop her physical therapy when she was 2 years old. The only reason we did that was so we could pick up occupational therapy to help with any sensory issues she might have had since she was a horrible eater.

The fall after she turned 2, she began preschool and all of her therapies went away. The thought process is that she would get her therapy through what they did in class at school.

I wasn't so sure about that, but my voice didn't matter. We are very blessed to have her in a fabulous special needs school with an even more fabulous teacher, but I still wasn't sure it was enough for her.

Now that she has been in school for almost five months, they are finally starting to agree with me when I say she needs one on one speech. They agreed to have the speech therapist observe her and yesterday we met to discuss the outcome of the observation.

So ... her expressive speech is at 12-18 months, but her receptive speech is at 24-36 months. And I pretty much concur with this, as much as these ranges suck.

They have agreed to do a formal evaluation and if everything goes as planned, she will be getting speech one on one sometime during her day at school. Thank the Lord.

The nice thing about all of this is that her teacher is completely on board with me. She said yesterday that she would like to see Payton doing more expressively. Me too! Payton is so smart and her receptive language is awesome. It is boggling my mind as to why her expressive speech is not coming along like everything else. I also am going to check into private speech options and see how much that might cost us. Ugh.

Payton Says "Mama" and "Da-yee"

A couple weeks ago, I mentioned that Payton is now saying "Mama" and "Da-yee" on a consistent basis ... it is music to our ears!

I tried to get her on video ... err maybe I should say audio ... and was successful ... sort of. LOL. In the beginning, you will hear what we hear from her pretty much all day ... "Do do da da I blah blah blah". LOL. She cracks me up.

Toward the end of the video, you will hear her say "Mama" and "Da-yee". She doesn't say it as clear here as she usually does, but you get the picture. ;)

Presenting ... Barbie!

Love her!

All along, Payton's biggest hurdle has been speech*. Over the past few weeks, she has really been doing well at repeating some words that we ask her to say. Actually, I should say that she has done well at repeating them clearly. Namely, "Mama" and "Daddy", which actually sounds more like "Da-yee" ... but whatever, it is so cute and I'm so proud of her!

Every morning, after I do her hair, she points to a picture of our family that is in our bathroom. She points and says, "Mama", "Da-yee" ... and then some approximation of "Mason" and "baby" (the picture was taken before we adopted Nika, but Payton is the baby in the picture). We go through this routine every day ... and if we don't stand there long enough to say "Mama" and "Da-yee" about 5,000 times, then she gets mad at me. LOL.

Tonight, while I was cooking dinner, I let the dog out. She started barking out on the deck, and apparently Payton associated that with Kyle getting home. I'm not sure why, but she did. So she took off running for the front door, saying, "Da-yee, Da-yee, Da-yee, Da-yee!" Oh my gosh, it was adorable! I went to the front door to see if she was right about him being home ... and she was. Kyle coming home has to be my favorite part of the day ... for two reasons. Number one ... the kids are so excited to see him, especially the girls. Number two ... well clearly, it means I have help with the kids. Haha!

*I want to make something clear since some of you are probably thinking, "Didn't she just turn 3? And she is only now saying "Mama" and "Da-yee"?" Yes, that is right ... thanks to that extra chromosome. One of the biggest delays that kids with Down syndrome have is speech. While Payton has been a rock star in most other areas, her speech has taken longer to develop. So yeah, hopefully you can imagine how ecstatic we are to finally hear her saying "Mama" and "Da-yee" with consistency. She has a lot of jibberish and some other words ... mostly approximations ... but the point here is that she is saying these words consistently ... and it melts my heart!

A two-word string ... finally!

I am sitting here with the kids feeding them breakfast and Payton just pointed at Nika and said, "Hi baby." Oh my gosh, I could just die. To hear her little voice speak in a two-word string is amazing ... I think she randomly has done this just one other time. C'mon baby girl ... I know you have speech in there somewhere!

Two word strings

Payton is a little chatter box, in her own language that I sometimes can't understand. Some words I can understand, but I'm not sure that I have heard her put together a two word string, other than "NO NO".

This morning I was putting her coat on and in order to put her arms in the sleeves, she had to set down her baggie of Cheerios. Zoe, our dog, approached and sniffed her baggie. Then, clear as day, "NO DOGGIE!"

Yay Payton! I cheered for her and repeated her ... and of course, kissed on her!

Another day ...

Today Payton did a little better than she did yesterday. We gave her codeine last night and this morning again, and then motrin throughout the day today. She seemed to do well on the motrin, but definitely was hurting more tonight. I have been trying to keep her throat moist, but she is limiting it to chocolate milk and formula. No juice. No water. Nothing. Little stinker! She has barely eaten anything since surgery ... pretty much just Cheerios. She doesn't want anything else ... no ice cream, no yogurt, no baby food, nothing.

We had Payton's transition meeting today too with our Early Intervention (EI) Case Manager and some lady from the public school system (I think). The lady basically just went over the next step for us, which is for Payton to start school within the public school system in September. Yikes!! And yes, they will bus her ... if I let her ... not sure if Kyle and I are ready for our two year old to get on a bus, so my personal bus may have to do. Payton qualifies for this program the fall after she turns two, so that is this September. Basically she will no longer receive therapy from EI here at home, but rather she will be in a school setting probably two mornings per week. She will also get an hour visit from her "educator" here at home ... an "educator" is her teacher. Fancy name, eh? They will evaluate her in a few months to make sure she qualifies for this program. If she does not (which she better), then I think it gets limited to the one hour visit per week with the educator.

We had our IFSP meeting update a few weeks ago, and at that time we were getting ST two hours per month and PT one hour per month. I decided to let go of the PT and pick up OT since Payton's biggest delay is in ST and OT. And no, they won't let us have all three. GRR. So we are waiting to hear from our new OT. We also are looking into getting her private therapy. We were going to do this even before, but now in light of this cleft palate news, we will definitely be persuing this.

The investigation continues ...

So I've been on a mission to figure out what exactly the doctor was talking about with Payton's palate and it seems it is called "submucous cleft palate". Sob sob sob. What in the heck?! The description of this explains it exactly and part of this ... which the doctor also mentioned ... is that the uvula is split. The uvula is the little punching bag thing that hangs in the back of the throat. So WHY has nobody ever noticed this before when they have looked in her mouth? Because they don't even really look! Here goes my beef with doctors. GRR! Here is a little of what I have found about this condition ...

A submucous cleft is a cleft in which the surface tissue of the palate is intact but the musculature beneath the surface is not adequately or properly joined. Usually the only outward sign of the cleft is a bifid uvula (the punching bag in the back of the throat is split). However, it is often completely not detected at all until the child develops speech difficulties (at about age 2).

Even though there is not an actual hole between the oral and nasal cavities, the musculature does not work as it should, and sometimes the growth, particularly of the maxilla (upper jaw) and the alveolar ridge (upper gum line) is compromised.

The most significantly noticeable loss of function is in the soft palate. The soft palate is absolutely vital to proper speech development. It must be flexible enough to make the kinds of closures necessary to produce normal speech. If closure is not reached, air will escape into the nasal area because it is simply not blocked off at the back of the throat as it should be.

Kids with submucous clefts do not always have to have corrective surgery. Sometimes the cleft is not large enough to create insurmountable problems and the problems that the child experiences can be overcome with aggressive speech therapy and orthodontia. On the other hand, many times the surgery is necessary in order for the child to achieve the kind of control needed.

I'm so mad. I'm mad that the doctor sort of blew it off as nothing. I'm mad that she made it seem like leaving a little adenoid tissue in there would help the situation. From what I can tell, even if you have all your adenoid tissue, there are still issues! As if Payton doesn't already have enough speech hurdles to jump, now we have to deal with this. Does it ever end?! Can ANYTHING in her life be normal!? It so isn't fair.

{Another} Payton Update

We had appointments with the GI and ENT today. She weighed 18 pounds 9 ounces, which was a little less than she has weighed in the past. I'm hoping it was just a difference in scales. Her length is 27 1/2 inches long.

The GI told us we could quit giving Payton the Zantac before bed as long as she continues to sleep soundly and does okay without it. So, we now will just give her Prevacid in the morning. We follow up with the GI after Payton's first birthday to see if we can try to ween her from the Prevacid. Reflux is such an ugly thing!

We went to the ENT as a followup to an ear infection. The infection is gone, but both ears still have fluid. So...next Thursday Payton will be getting tubes in her ears to help drain the fluid out of her tiny ear canals. Hopefully that will lead to a healthy winter season. They also did a pre-op hearing test on her, which showed mild to moderate "hearing loss", which really just meant that there was fluid and she is basically hearing under water. So, we are hoping that her speech takes off after getting the tubes. She babbles all the sounds that she should be, but consistently she really only says dadadadadadadada. What about mama?!?! :)

We also had PT today and the therapist was blown away by Payton. It had been longer than normal since she had seen her due to scheduling conflicts and Payton has really blossomed since then. She is now getting up on hands and knees and crawling more than an army crawl. She basically gets up, leaps forward and then starts the process all over again. She also showed her PT that she can cruise furniture...her PT about fell over when she did that! She is doing excellent in the gross motor area...we are so proud of her!! As far as fine motor goes, she is doing good with that too. She has had the pincer grasp down for a couple months now and is self-feeding. She still gags a bit on table foods or lumpy consistency, but we are working on that.

Here is a video of her crawling...