My girls. And my boy.

My girl.



A little over a week ago, I sat in an operating room holding my youngest daughter as she was sedated for surgery. Her tonsils and adenoids had to come out. No matter how many times I've witnessed my children be put under anesthesia ... it never gets easier.

Surgery was a success.

Nika was a champ.

The crazy kid bounced back faster than a cheetah can cross a field. She and I spent the night in the hospital with the world's most dreaded roommate. For her first post-op meal, she had macaroni and cheese, peas, applesauce, ice cream and a popsicle. Perhaps I am forgetting something. I think I will enter her in a hot dog eating contest, because there is no way she wouldn't win.

Nika + food = bliss.

*

My other girl.



My super sassy, adorably scrumptious, full of attitude oldest daughter.

This chick is giving me a run for my money. She thinks she rules the roost and the hammer is about to come down. Problem is ... she is so damn cute that I can't help but just kiss her when she looks at me out of the corner of her eye and raises her finger as if to tell me, "No!"

I love her sass and I can't imagine where she gets her attitude. She'll go far in life ... I just know it.

After about five months of school, I finally was able to speak to Payton's speech therapist today ... I'm talking her school speech therapist. I have never heard from this woman and was beginning to get rather irritated.

Our conversation was interesting, to say the least. She acknowledged that she had received the information concerning Payton's apraxia diagnosis. Yet she didn't really seem to care to address it.

So I did.

In the interim, she told me that she will no longer see Payton ... that, due to budget cuts ... her assistant will see her and all the other kids that get one-on-one. She -- the speech therapist -- will only be working with the kids who can handle group therapy.

Does that seem backwards to anyone but me?

So then I asked the magic question, "Are there any speech therapists that are PROMPT trained?" 

She chuckled and said, "Yes. Me. And I have been using PROMPT on Payton."

Interesting. To say the least. 

So let me get this straight. Said child has an apraxia diagnosis and has been receiving speech therapy by a PROMPT trained therapist -- which we want and need -- and said speech therapist is going to pass her off to her assistant, so she can see higher functioning kids who can deal with group therapy. 

Did I get that right? Because it sure as heck does not make sense to me.

And I told her that. I'm pretty sure she completely understood what I was saying and if she didn't, I would really question her as a therapist. After I made it clear that I would fight to have her kept as Payton's therapist, she told me she would talk to her supervisor and see what could be done in a situation like this.

The thing that makes me so angry ... is that had I not brought it up, they would have just swept it all under the rug.

So I wait. She has until Friday to call me and if not, "Hello, Mrs. Supervisor? I have a problem that I need addressed."

*

My boy.



My baby boy ... who isn't so much a baby anymore. 

Little dude is six and in kindergarten, but he is the size of an eight year old kid in second grade. He has struggled with his reading, letter sounds and sight words, but he is getting better as we drill them into his little head as the days go by.

He is so obviously my kid. I'm told he is a math whiz ... that's me. I took college algebra for fun ... for easy credit. My husband ... not so much.

Yep, that's right ... my kid. Oh, and the tall genes ... those are mine too. Sorry babe. 

I have quickly come to realize just how grown up my boy is getting. He is currently in that awkward phase of life without any front teeth. How long does it take for those things to grow in, anyway?

The past few weeks, Mason and I have had daily battles over Super Mario Brothers on the Wii. We seriously bicker the whole time ... loving bicker, of course.

You made me die! You took my mushroom! Get out of your bubble! Etc etc etc.

But I love it. He loves it.

And these are the times that we'll remember forever.

Follow up to T&A

Yesterday we had an appointment with Payton's ENT for follow up to her T&A surgery. My concerns have been clarified ... she does not have a submucous cleft palate. She does, however, have a bifid uvula. In light of that, the surgeon palpated the palate, but did not feel any evidence of a cleft. Despite this, she was very conservative in removing the adenoids, basically acting as though she did have a cleft, even though she does not. I feel comfortable with this. We have not noticed her speech turning nasal since surgery, so it seems that all is well. Who would have known there could be such issues?!

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.

Payton is miserable

So much for my happy girl ... Payton was M I S E R A B L E today. If either Kyle or I weren't holding her, she spent her time lying on the floor moaning and crying. So needless to say, she pretty much was held all day. She also slept a lot up until about 3:00 p.m. ... probably because I had to dose her up on codeine last night. She has drooled all day and we can barely get her to swallow her medicine ... and this is a child who takes any medicine at any time. We tried to just give her regular tylenol throughout the day because the codeine is making her constipated, so she is miserable because of that too. I gave her a babylax this afternoon and that gave her a little relief. But we just gave her more codeine since she is so miserable, so it is just a vicious circle at this point.

I haven't gotten much more info about the submucous cleft palate, other than that it affects articulation. So ... it looks like we will have some pretty intense speech therapy (public and private) ahead of us. Fun fun.

Please say a prayer that my sweet girl gets some relief quickly.

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.

Payton Update

{Payton resting in the recovery room}

Payton did well in surgery, although it took a little longer than I expected and I was pretty restless out in the waiting room. After about an hour and 20 minutes, they brought us back to the PACU where Payton was recovering. She was pretty out of it, but was not fussy like they expected her to be. All the nurses kept saying she was their best surgical patient ever.

Payton's surgeon was Dr. Mantle ... we did not meet her until right before surgery and she was fabulous. She had an awesome bedside manner and I felt very comfortable with her. After surgery, she said Payton's tonsils were not overly large, but that she had a lot of adenoid tissue. We are really hoping the removal of that adenoid tissue will help with Payton's constant congestion. Dr. Mantle also told us that Payton's palate is not completely fused, or something like that. The information she gave us was very confusing, but this is the best that I understand it. Essentially the two sides of the palate are supposed to fuse (I think around one year of age), but Payton's did not fuse all the way together. Therefore, I think her palate does not go back as far as it should ... or something. So Dr. Mantle left a little bit of the adenoid tissue in there to prevent an open space ... or something. Apparently taking all the tissue out would most likely cause her to have nasal speech, but leaving this little bit of tissue in there should prevent that ... hopefully. This makes me a little nervous, but there is nothing we can do now. I will be asking more about this palate thing when we follow up with the ENT. Payton's ears were also checked during surgery, but both tubes were in place so nothing has changed there.

After being in recovery for an hour or two, they moved us up to the Pediatric Indermediate Care Unit. Payton was initially pretty uncomfortable, but she was a total trooper. None of the nurses in the PICU could believe she had just had a T&A because she was not screaming like the kids usually do. We gave her 3mL of tylenol with codeine every 4-6 hours through the night. She slept way better than I expected, only waking up when she had to take her meds.

This morning she was in great spirits. She drank several ounces of formula and even ate a ton of cheerios. She was walking the PICU floor greeting everyone and was just happy as could be. I was started to question whether or not they really did surgery! We had her only on regular tylenol throughout the day since she seemed to be doing okay. Our pharmacist warned us not to use the codeine if we don't need to because it isn't good for underdeveloped kidneys in little kids. Yikes. Tonight Payton was drooling a lot and seemed to be having pain, so we gave her some codeine before bed to help her sleep. Hopefully we can resume just regular tylenol in the morning.

Payton has surgery tomorrow

Yikes! Payton has her T&A tomorrow at 1:00 p.m. I'm so nervous, I definitely bow down to all those mommies that have to hand over their babies soon after birth for open heart surgery. Please say a prayer for her (and me!) and I'll update as soon as I can.

Surgery Update

I just got Payton's T&A rescheduled to have it done at the hospital on February 22. Although we can't have our normal ENT do the surgery, I feel much better knowing that it will be at the hospital and she will be monitored more closely. I talked with another mom who had the ENT that will do Payton's surgery and she said she was fabulous. What a relief!

Test Results

Our pediatrician just called regarding the AAI x-rays we had taken on Payton the other day. Everything looked normal, so that is great news.

Regarding her upcoming T&A, I'm trying to get it switched to have the surgery done in the hospital. I've learned that kids with DS have a tendency to have bad swelling and perhaps bleeding. The swelling could make her throat swell shut and cause her to be unable to breathe. Yikes. So I'm pushing for an overnight stay for her surgery.

I also forgot to mention the other day that the ENT could not locate the tube in Payton's right ear, so it may have fallen out already, in less than a year. Ugh. So he is going to look when she is knocked out for surgery and if it is missing, then he will replace it.

Sign us up for surgery

We saw Payton's ENT today and we are officially scheduled for a tonsillectomy and adenoidectomy (aka: T&A) on 2/28/08. It will be done on an outpatient basis since she does not have any heart issues, otherwise it would have been done in the hospital. In addition to helping her sleep apnea, we are hoping the adenoidectomy will help with her persistent runny nose.

During a T&A, the doctor hyper-extends the neck. This is a problem with kids with Down syndrome, due to their risk of having instability in their atlanto-axial joint in their neck. Typically, an x-ray is taken at 2-3 years of age to see if they have the instability. I wanted Payton's x-rays done prior to her surgery, just so we know what we are dealing with. Her geneticist also wanted it done now for general reasons, because she is so active. If she has the instability, that means she cannot be put in a position that would hyper-extend her neck (i.e. somersaults, wrestling with her brother, etc). Yikes ... we may have a problem there.

Long story short, her ENT gave us the script for the x-ray and we went and had that done today too. Try telling a two year old to stand still, arms down and at a 90 degree angle with the wall ... right. Then try telling a two year old to do that, but to tilt their head down, and then back. We managed to get a few shots so hopefully the radiologist will be able to tell is she has AAI. I pray that she does not.