Monday, February 25, 2008

Mason Update

I feel so bad for Mason, like he gets lost in the shuffle of everything we have going on with Payton. He is deprived by no means, but he is hungry for attention when Payton's therapists come to the house to see her. Sometimes I feel like we get so caught up with trying to get Payton further along in her development that Mason gets left behind. Sigh ... maybe I'm just feeling sorry for myself.

Mason seems to be doing much better at school than he was the last time I posted about that a month or two ago. (As I type this, he is walking toward my bedroom and not staying in his bed ... like ALWAYS). The thing I hate about daycare is I feel so out of tune with what he knows academically. His teachers can tell me one thing, but until I see it with my own eyes, it is hard to believe. It is really hard to get him to focus on "learning" here at home ... he'd rather watch TV, play video games ... anything but recite his alphabet, count or learn to write letters. Sigh ... that is going to change my dear son!

Kyle signed Mason up for soccer ... he is finally old enough to participate in an extra-curricular activity and we are so excited, as is he. Every day after school he asks if it is time to go play soccer yet. So cute. I think practice starts in March ... and we thought we had no time now? Oh, things are about to get interesting.

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.

Sunday, February 24, 2008

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.

Saturday, February 23, 2008

More info ...

Before birth, the palate begins as two divided shelves of tissue. The shelves grow toward each other and eventually join in the midline. ("Midline" refers to an imaginary line that divides our bodies into left and right halves.) There is muscle within these shelves; when the shelves join, the muscles interdigitate (interlock).

If the shelves fail to join, the child is born with a cleft palate. When the shelves join but the muscles fail to interdigitate, the child is said to have a submucous cleft palate. In other words, below the mucous membrane, the muscular portion of the palate is still separated. Frequently, bifid uvula is a clue to the presence of a submucous cleft palate.

Interdigitation of the muscle is important to the palate's function, so submucous cleft palates are inefficient compared with normal palates. This can cause problems with speech, swallowing and eustachian tube function (leading to frequent ear infections).

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.

Thursday, February 21, 2008

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.

Friday, February 1, 2008

There are multiple uses for pizza sauce ...

The other night, we ordered Pizza Hut for dinner. Pizza is one of the few solid foods that Payton will eat. While I was feeding her, she randomly grabbed a breadstick and started dipping (she has NEVER eaten the sauce before, so I ran for my camera) ...

Dip, dip, dip ...
Mmm, tastes good!
Wow, what does this do?

I think I need some more ...Another taste ...

This painting stuff is fun!